Ototoxicity and a Christmas Miracle

Some mornings I stay in bed and just listen for a moment. Sound is all around me. The house creaks. Outside are chirping birds or pattering raindrops or distantly passing cars. I can hear myself breathing and the soft rustle of the sheets as I move. A Westie boy sighs in his bed on the floor. I’m connected to the world around me.

Since my daughter lost her hearing, I have never again taken my own for granted.

(Jen adored Joni Mitchell and this song in particular.)

A bond Jen and I shared before her brain injury was our passion for music. Jen’s collection of music rivaled that of any audiophile’s. To rob her of her hearing on top of everything else seemed the cruelest blow of all. I felt her loss almost as keenly as if it happened to me. At my lowest point, I couldn’t bear to listen to music myself, snapping off the car radio violently and in anguish. If she couldn’t hear it, neither would I.

It’s called ototoxicity. It seems the very antibiotics used to eradicate infection can also destroy hearing. It’s one of the ugliest words I’ve ever learned. Along with irreversible. And permanent.

Eventually we adjusted. What choice did we have, really?

When Jen’s nearly useless hearing aid failed, we replaced it with an amplifier. That contraption involved Jen wearing headphones and us speaking into a microphone, very slowly and clearly. With Jen’s intense concentration and her newly developing ability to read lips, she could hear a bit. One-on-one. Still she was sinking into isolation and despair. It all was just too much.

DSC01333One day I read about a new high-tech hearing aid and dragged a very reluctant Jen in for yet another hearing test. She had long ago given up hope that anything could be done.

Giving a hearing test to a brain injury patient is challenging to say the least. If they don’t respond to a beep, is it because they don’t hear it or because their processing is too slow to react?

We were greeted by an audiologist who more resembled a longshoreman than anything else. A big burly guy, he was so gentle and kind to Jen that watching him I was fighting off tears.  The kindness of strangers has been my undoing more than once through this long ordeal. He spoke into her microphone slowly and patiently, guiding her through the test.

Then he sat down to talk to me.

Him: I’m so sorry this has happened to your beautiful daughter.

Me: (throat tightening) Thank you.

Him: You know her hearing loss is profound.

Me: (No kidding.) Yes.

Him: I can sell you a hearing aid, no problem. And it will help a little. But I actually think Jen might be a great candidate for a cochlear implant instead.

Me: No, I’ve already asked about that. Her ENT said she is not.

Him: (insistently) Listen, it’s my job to sell hearing aids. But I’m pretty sure she’s the right type of patient for a cochlear implant.  Please take this list and check into it. There is hope out there for her.

Hope. What can he know of hope? I wasn’t sure if I could make myself – or Jen – vulnerable to hope once again after having it dashed into smithereens so many times.  But I donned my suit of armor and made the call prepared to suffer the slings and arrows of more crushing disappointment.

Yes, Dr. Coelho, the surgeon at VCU Medical Center said. I think we can help her. Do you want to wait until after the holidays for the surgery?

No. Let’s do it now. (faint glimmer of hope stirs)

On December 21, three years ago today, Jen had cochlear implant surgery. We wouldn’t know for another month whether the procedure would work – things needed to heal before the implant could be turned on. She came home from the hospital to spend another silent Christmas with us.

The day came at last. Jen was remarkably composed. We sat in the hospital audiologist’s lab and she turned the device on. She said “Jennifer.” Jen put her hand up to her head and touched the device. I said “Jen.”

And she turned her head towards me.

It’s not like turning on a switch. You don’t go from hearing nothing to hearing everything just like that. It takes months, if not years, to learn to hear again properly.

No, it’s not like it was before. Jen still can’t hear music or talk on the phone. But she can converse now around the dinner table. We were driving and she heard the car’s directional blinker. She came out of the bathroom once with a big smile and said “I heard the toilet flush!”

Small miracles. We’ll take them. Especially in the form of gentle and generous longshoremen.

Here’s my gift to you. Watch this and then listen to a Christmas song. Really listen to it.

I found this song on a favorite blog, “The Immortal Jukebox.” See if you don’t love it too.

Wishing you all the happiest of holidays and a very Healthy New Year,

Barbara

 

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About Silver in the Barn

Life in a 1915 farmhouse in Central Virginia. Blogging about whatever happens to catch my fancy - sometimes nonsense, occasionally not.
This entry was posted in Music, Random Ruminations and tagged , , , , , , , . Bookmark the permalink.

118 Responses to Ototoxicity and a Christmas Miracle

  1. You and your daughter Jen are so fortunate to have each other on this difficult journey of life. Thank you for illustrating gratitude – and crushing despair and heartache – with such love and compassion. May your Christmas together be Miraculous.

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  2. Victo Dolore says:

    Thank you so much for sharing this story! I am so, so sorry this happpened to you both. ((Hugs))

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  3. … no words. Just sending loving kindness your way.

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  4. Oh, Barbara, you undid me completely. Reading your story, with Joni Mitchell singing in the background, the tears flowed readily. You are an amazing woman with an equally amazing daughter. Thank you for that baby’s laugh (probably my favourite sound in the world) and for the Christmas song. All beautiful. xx

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  5. Sandra says:

    I think the power of hearing is one of the most under-appreciated – until it’s lost. I can only begin to imagine the isolation that your daughter has experienced, and I wish her, and you, all the very best for this Christmas and the year to follow. I hope she goes from strength to strength, as I’m sure she will with a mother like you supporting her. Lovely post.

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    • So true, Sandra. At one point, I walked around with a pair of sound-deafening headphones just to have a glimmer of what it is like, and it was hell. I actually started to lose my balance. I ripped them off after an hour. Thank you so much, Sandra, and wishing you and yours a very Happy Christmas and New Year as well.

      Liked by 1 person

  6. menomama3 says:

    Thank God for the kindness and insistence of the “longshoreman”. Your telling this story was the sound of love, Barbara. And thank you for the video of the contagious toddler giggles, a sound that can’t help but make you appreciate hearing. Hugs to you and your family – Merry Christmas!

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  7. As a mother of a special needs child, I know about all about hope and how the definition of a normal life changes. One of my closest friends has a now 19 year old who was born prematurely and deaf. The wonderful VCU people gave him an cochlear implant, and now beyond her wildest hopes, he will be going to college in the fall. Miracles indeed happen, big and small, and your story is so perfectly timed for this most hopeful of seasons. Much love!

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    • Well, then, of course you understand completely, Alison. And true, too, that the changed life can still be a happy one. At VCU is a bulletin board in the audiologists’ lab with the faces of the babies and tots, really, that have received the implant. Your friend’s son is probably up there smiling down at us. Much love right back.

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  8. joannesisco says:

    It seems that the things which affect our children exert greater gravity on our hearts than that which directly affects us.

    In all the terrible things your family has endured, this was a great gift. What a heart-warming story ❤

    Merry Christmas and best wishes to you and your family!!

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  9. Almost Iowa says:

    Him: (insistently) Listen, it’s my job to sell hearing aids. But I’m pretty sure she’s the right type of patient for a cochlear implant. Please take this list and check into it. There is hope out there for her.

    Hope comes in many packages. What a delightful story!

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  10. nrhatch says:

    So glad Jen regained the ability to hear turn signals and flushing toilets. Can she hear laughter? That might be the sound I’d miss the most.

    Have a Cule Yule today . . . as darkness gives way to light.

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  11. Tears of happiness first thing in the morning. I am so grateful you found a Christmas miracle. 🙂

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  12. Barbara Stevens says:

    Once again you leave me humbled, my friend. Jen has the most beautiful green/blue eyes and the most beautiful mother.

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    • Jen’s eyes are the most gorgeous green and are what cause perfect strangers to walk up to her and remark on them. Barbara, I thank you so much for your friendship and support. And you would have done no less than I have in the same circumstances – of that, I am completely convinced.

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  13. kristieinbc says:

    It’s good I had a hankie in my pocket. This is such a beautiful post. The awfulness of the loss, and the hope of redeeming at least some of what was taken away. Thank you for sharing this with us. Merry Christmas, and I hope your New Year is filled with more miracles.

    Liked by 1 person

    • I’m so pleased you got something out of reading this part of Jen’s story. It’s been a nightmarish roller coaster ride, and it helps enormously to occasionally share a bit of it – especially when there is a happy ending. Sending up my holiday greetings to you and your lovely family, Kristie.

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  14. dorannrule says:

    Yours and Jen’s story brought tears to my eyes too! It is a Christmas story that should be in a book. Yours and Jen’s bravery and perseverance have wrought so many positive rewards. And you have met wonderful people in your journey. Barbara, thank you for sharing this remarkable post to remind us of what is really important in life and not just at the holidays.

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    • You’re right, of course, Dor, that so much of what we focus on (i’m as guilty as the next person) is completely meaningless in the grand scheme of things. And you are right, again, that I have met the most amazing people through Jen’s long ordeal. My faith in mankind has been reinforced through all of this rather than the opposite. Merry Christmas to you and your beautiful family, Dor. See you in the New Year!

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  15. Jodi says:

    I cant find the words to express my heartfelt compassion, sorrow, joy, admiration…. Sending love to one of my heroes! Until i can gove you a toght hug in person, i hope you can feel it. Xo

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  16. Jodi says:

    Oh dear. Typos from iphone. Hopefully made you smile. Ugh!! 😝

    Liked by 1 person

  17. Barbara,
    As usual you bring your readers to places in their hearts and souls that are sometimes hard to enter. This came on a day where my sister’s dog suddenly died last night and she is still unable to face the fact that our dad died 6 months ago–not a good moment in time for her right now. But, life does go on and there is a reason for most everything and there is “hope”. I love Mary Chapin Carpenter and I did “hear” her song–beautiful. Have a wonderful Christmas.
    Cindy

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    • Thank you, Cindy. I know this wasn’t an easy post to read but my message of hope….and salvaging a life out of what remains….was intended to help lend a little perspective to somebody who might be feeling sad. I am so pleased that you really “heard” the Mary Chapin Carpenter song. It’s a new one to me and I’ve probably listened to it one hundred times since it was posted a week or so ago. Even though Jen can’t hear it, she can benefit from the “boost” I get from it. Sending all my best to you and your family this Christmas season. Barbara

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  18. Mary says:

    I just want to say ” I love you, Barb!”

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  19. Sue Mayo says:

    Thank God for second opinions. She seems to be coming along nicely. She looks so pretty sitting there in your kitchen. Have a Happy Birthday tomorrow and a very Merry Christmas!

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  20. skwtuxedo says:

    What a beautiful piece, Barbara. I am so glad that your daughter, Jen’s, transplant gave her back some of what she had lost. How devastating that loss must have been for her and for all of you.

    My father became profoundly deaf in late middle age. We communicated with him through hundreds, no thousands, and thousands, of notes written to keep him abreast of the conversation (he was an extremely social person); and we often asked him to tell the story, so that he knew exactly what was being said throughout the main thread of the conversation. He watched TV with Closed Captions and communicated on his Telephone Device for the Deaf (TDD). It never held him back. And there was not a SINGLE time that he did not say, “Thank you, operator. That was very helpful.” Always thanking people for their efforts a d kindnesses.

    His deafness was one of the chief reasons that I pushed for my mother and father to stay in their own home until the end of their lives, with (ultimately) 24/7 home health care.

    I kept all those notes. They are a testament to enormous family love.

    Wishing you and your family a wonderful Christmas and a most happy New Year!

    Susanne 

    Sent from my Verizon Wireless 4G LTE smartphone

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    • I’ve always sensed the enormous love in your family through the photographs you’ve shared with us.The fact you spared your father from the anguish of isolation is testimony to that love. Your Dad was lucky to have that kind of family because so many are pushed into a corner and isolated. Jen had the double whammy of a brain injury and so could not read the closed captioning fast enough to understand what was going on. We still have to use the closed captioning (the words, she calls them) on the television but she seems better able to manage them now.

      I’m not surprised you have the notes. It must be such a treasured memory of your father, I’m sure.

      Wishing you and your family a very happy Christmas and New Year as well, Susanne. Thank you.

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  21. John says:

    Wow. God bless your family. Thank you for sharing this touching story, Barbara. Have an awesome Christmas!

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  22. markbialczak says:

    So many emotions, Barbara. I’m so sorry for you and Jen and your husband for that initial, horrible blow. I’m so thankful to the longshoreman and the surgeon and God for allowing the hope and medical technology and personal skill and divinity to combine to allow Jen and you all the return to the comfort of the little treasures. And thank you for sharing them with me on this anniversary. Bless you all, my friend.

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    • Yes, thank you for mentioning the medical technology. To be spared a completely silent life is just the single greatest miracle of not only our lives but many, many others who have benefited tremendously from cochlear implant. Mark, your message really touches me; thank you so much.

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      • markbialczak says:

        You are welcome, Barbara. Reading your loving post, I saw many things had to come together from many directions to help Jen, and that the impact of the cochlear implant is significant to many attempting to recover from silence.

        Liked by 1 person

  23. Thom Hickey says:

    Really beautiful Barbara. It seems to me the small miracles are surrounded by the larger miracles of Jen’s spirit and the love surrounding her. Regards Thom.

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  24. I am so pleased that you came across that honest, decent man….

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    • Because he could have just sold me a hearing aid, Helen. So many would have done just exactly that. I didn’t realize I was in the presence of somebody really special.

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      • Those are the people who change lives….they open the doors

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      • That’s right. I can’t tell you how close I came to blowing him off; I knew better, right? I mean an actual medical doctor had said she wasn’t a candidate. But he kept pointing to that open door….I know I’ve already sent a Christmas greetings but consider another sent your way, dear Helen.

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      • That’s most kind of you….
        I’ve always been initially sceptical where it comes to medical doctors…I remember them as students….and if the way they behaved on the rugby field was any guide to a potential bedside manner and diagnostic skill then I didn’t fancy my life in their butter fingered hands…

        Liked by 1 person

  25. dorothy says:

    Jen,Barb and Roger….you are all exceptional, having to experience challenges every day but yet never giving up . It shows that caving in to one opinion is not an option in so many cases and thank heavens you found that one needle in the haystack. Beautiful Jen…Merry Christmas… and to all the Scotts happy holidays. And Ms.Barb…..happy birthday tomorrow.

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  26. What a profound letter of love. All the best to you and family.

    Liked by 1 person

  27. The way you started, with the sounds you hear from your bed, was beautiful. There are so many small things in our lives to love and give thanks for–sounds, sights, smells, tastes, touches, the pleasure of movement. Thank you for reminding us and for sharing your story and Jen’s. In later life, my mother’s hearing became bad. Until then, I’d never realized how crucial our sense of hearing was for social interactions. Not being able to hear or hear well is isolating.

    Best wishes to you and Jen.
    And thanks for the Mary Chapin Carpenter song. She’s one of my favorites.

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    • It’s all about the small things, I feel. With your own experience with your mother, you surely understand the potential deafness has for isolation and a life of despair. You are exactly right that there are so many small things in our lives to feel immense gratitude for.

      Liked by 1 person

  28. caffienna says:

    Thank you for writing this. Cannot say anything else just now, but maybe find a song.

    Liked by 1 person

  29. Wes says:

    As of now my mouth is empty of words and my heart is filled with gratitude! Beautiful!

    Liked by 1 person

  30. Eliza Waters says:

    Barbara, you and Jen have been to hell and back and your sharing the story inspires me to appreciate the things we all so often take for granted. Music, birdsong, the wind in the pines, the waves upon the shore – Life is a gift – thanks for sharing your journey of hope with us.

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  31. la_lasciata says:

    I have no idea how either Jen or you two have come through this. No idea at all. It’s taken such courage and such determination as to make anything less seem paltry – and almost everything is less … Thank you for the occasional glimpses into your suffering – and your joy.
    Thank you.

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  32. bkpyett says:

    This is such a moving story, and I hope the cochlear implants are working well for Jen. May Santa’s bells ring out for all of you and that you may all be blessed with true happiness.

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  33. Parnassus says:

    Hello Barbara, I am very happy that Jen got the help she needed, and that the results were so successful. Too often, medical technology, miraculous though it is, can be reduced to a kind of mechanical situation, not acknowledging the need for human considerations and communication. This can never be the case. Healing results when medical science is harnessed by those with compassion and understanding.
    -Jim

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    • I understand what you’re saying here, Jim, completely. And the cochlear implant has been the perfect combination of science and human consideration for Jen, rescuing her from a silent world in which she was floundering.

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  34. KerryCan says:

    This post has it all! It’s a beautiful story, wonderfully written, with a clear-cut hero (or many heroes and heroines!) AND a happy ending. And a sound track! I’m going to pay extra attention to the sounds I hear today, to honor Jen and you and the guy who made such a difference!

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  35. So beautiful! Brought tears to my eyes. Wishing you all a beautiful, lovng Merry Christmas!!

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  36. Zambian Lady says:

    What a nice story. I wish your daughter well and that the hearing improves sooner than later. Compliments of the Season to you and yours,

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  37. reocochran says:

    When you told us in another one or two posts about different parts of Jen’s abilities, I had missed that she could not hear very well, almost nothing. I cannot imagine how hard this was for you both, you as a mother who would do anything to make things better, but were told the cochlear implant (by that dratted ENT) would not be right fit for Jen. (She may not have been a ‘good’ candidate in his mind, but thank God for the man in the hearing aid shop, the longshoreman with a great big heart and such kind and gentle ways…. ) This story made me cry. I am always going to appreciate hearing, from this day forward, even more than I used to, Barb.
    I have loved, “River” song for awhile since Joni Mitchell is a blessing, especially like her songs as an older singer, with a little more depth in her voice. I enjoy, as well, Mary Chapin Carpenter’s song, “Come Darkness, Come Light.”
    Oh how happy I am for Jen’s three years of having some beauty found in the sounds of things, including a toilet flushing. You started this like a reverent poem, one with majesty yet simplicity, in your hearing the dog’s snuffling sleepy noises, rain, cars and chirping birds. Barb, this should be published in a magazine. I am serious! Hugs, Robin

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    • Hi Robin, thanks so much for your kind words. I don’t think I’ve mentioned Jen’s deafness before so you didn’t miss anything. After her seizures struck and she was hospitalized on life support for such a long time, she developed very serious hospital-acquired infections. Those infections were blasted with powerful antibiotics which subsequently left her almost completely deaf. So be careful if you ever are in a situation like this or overseeing somebody who is to ask if there is any other kind of antibiotic that might be used instead.

      Isn’t Joni Mitchell a wonder? I think of her a modern-day troubador; such a poet, she is. Her voice is really low now, she’s smoked so much over the years that it has lowered a few octaves, I think.

      It makes me happy that you take a moment to appreciate your hearing even if just briefly. Those of us who are unafflicted have so much to be thankful for. And the real point of my post is to illustrate how much difference a person can make in somebody else’s life by just caring enough to take the extra step to advise about another treatment method. How lucky I am to have met this audiologist. Hugs and warm Christmas greetings right back to you, Barbara

      Liked by 1 person

      • reocochran says:

        I was just checking in, saw you on Judy’s post and did you notice she mentioned bumblebees? ha ha!
        I had five days off and am grateful for not even wishing to peek into other’s posts. I wanted to ask how your Christmas was with Jen and your special husband. I also read more about saving turtles and thought of his wonderful organization and how you are such a supporting wife and member of society. Isn’t it nice to be complimented with no intentions or expectations on the other’s part? I felt warm and fuzzy today coming to the library and wished to send you, Jen and hubby wishes for a fantastic New Year’s and hope that Jen will get excited about fireworks and the beauty in life that is visual. So thankful she has recovered so much of her abilities, thanks to technology, doctors and the audiologist, perseverance on her parents’ part and determination by herself, too. She looks like a positive force to reckon with, Barb! Hugs, Robin

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      • Yes, it is very nice to be complimented by my favorite buzzing bumblebee! So nice of you to ask about our Christmas which was a very Merry, though quiet, one. Just the way we like it actually. Good music, good food, time away from the rat race. I hope you too had a very nice Christmas and that this new year will be a happy one for you and your family. I’ve taken a break from blogging and am just tiptoeing back in. I need to see what you’ve been up to. Heading over now. Hugs right back to you, Barbara

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  38. What a touching story, Barbara. It sounds like you and your daughter have been to hell and back over the years. “Ototoxicity” – what a hateful word, though more obscure than “side effects” or “collateral damage”. I can just imagine the range of emotions you (and Jen) must have been through in this rollercoaster. And, yet, there are highlights like the man who recommended you check on the implant; and you listened and went through with it (and he forfeited a profit from selling a hearing aid). Such an important reminder to treasure the “small” things, our senses and what they bring to us – birdsong, the wind in the trees, sheets rustling on the bed, footsteps in another part of the house, words, conversations, music!

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    • Our beautiful, glorious senses that bring so much to us, Annette. Without them, we can and do survive but the compromise leaves a terrible gap. To read you saying that this reminds you to treasure the small things you hear all around you pleases me immensely. I send you warmest wishes -Frohe Weihnachten – and Happy New Year.

      Liked by 1 person

  39. Jane says:

    Miss Silver…you never cease to amaze me. What a special daughter you have. So strong to continually be tested and yet always prevail. She could not have chosen a better mom and dad.
    Yours is a remarkable story and I am so glad you shared. Thank you for your strength and inspiration. Jane

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  40. I don’t know the backstory on your beautiful daughter’s hearing loss given I’m a new reader.

    But I do understand hearing loss. I lost 70 percent of the hearing in my right ear nearly four years ago during an episode of sudden sensory hearing loss. I know exactly when my ability to hear vanished. I’m basically deaf in that ear now and nothing can be done given I have permanent nerve damage. Cause is unknown.

    Like you, I will NEVER take my hearing for granted.

    I am so thankful that Jen was able to regain some of her hearing through the implant.

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    • Audrey, my daughter’s deafness arose from the antibiotic they used to eradicate some life-threatening hospital-acquired infections. It was a last ditch effort to save her life and the result was total deafness. Her hearing has been restored on only one side; the other ear is still totally deaf. She doesn’t want to pursue having another cochlear implant installed because it is a lot of work for her to maintain and I think she feels she hears “good enough’ now.

      So I imagine you have the same condition Jen has now – the inability to detect where sound is coming from. Our audiologist explained you need two ears to get that stereo effect of discerning in which direction sound is coming. So I can be behind her and call her name and she will hear me but be looking all around for where I am. She can’t tell where I am. Do you have this problem now too?

      Have you, by any chance, investigated cochlear implant? I ask because Jen’s diagnosis is senso-neural hearing loss. Her ENT said she was not a candidate for it but when I pursued this with the doctors at VCU Medical, who specialize in cochlear implants, well, you know that our story has a happy ending.

      I am so sorry you’ve had to undergo this terrible loss. I spent one hour early in Jen’s deafness wearing sound-deafening headphones because I wanted to experience a bit of what she was going through. It just about drove me mad.

      Thank you so much for reading and leaving me this comment, Audrey. Wishing you a very joyful Christmas season. Barbara

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      • Barbara, my investigation into resolutions took me first to my local ENT, then to an ear specialist at the University of Minnesota. Early on, I could have tried a surgery to restore some of my hearing. The percentage of success was so low and the percentage of possible hearing restoration so minimal that I opted not to have that surgery.

        For now I am dealing with my single ear deafness as best I can. It’s so frustrating, though, to constantly ask people to repeat what they’ve said and to always make sure I am standing/sitting/walking on the “right side” of someone so I can hear them.

        I find myself missing out on so much because of my deafness. And few people get it.

        Yes, I have the exact same issue as Jen with not being able to tell where sound comes from. I’m just like her, looking all over to decipher where someone may be.

        If there’s any “white noise,” like running water or anything in the background, I really struggle to hear.

        I have not investigated the cochlear implant as, for now, I feel like I’m managing OK.

        Please feel free to email me whenever you wish with info you think may be of value to me.

        What a wonderful Mom you are for Jen, to not give up, to pursue restoration of some of her hearing. And what a battle to save her life. Your family has endured much.

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    • Outlier Babe says:

      Thanks most likely to my Behcet’s disease within my brain, which has caused Meniere’s symptoms, I have a timing difference between my two ears in when sound reaches my brain–one ear’s sounds lag significantly behind. There is also some low-frequency hearing loss. (BTW, I went over twenty years with various ENT’s telling me there was “no problem” before getting this diagnosed!)

      Bottom line, I, too, cannot distinguish speech well when there is background noise of any kind, and people do NOT understand. This is what I have found has helped me:

      “I’m so sorry for interrupting, but I have an auditory discrimination disorder. I hear well, but my brain has trouble making sense of the sounds unless you slow down your speech. Would you please speak more slowly for me? I can speak normal-speed, but I need you to slow down.”

      Notice how I say “slow” three times? That is key.

      I don’t really need slow speech–I need enunciated consonants, dead air spaces between words, and a volume louder than any background noise. But no one ever understands when I ask for these, no matter what wording I attempt. The wording above works pretty well in most cases. Sometimes they go down to 33 1/3 r.p.m. and I need to speed ’em up, but if that’s the worst of it, s’okay.

      Perhaps this will help you.

      Like

      • That is one of the great challenges for a cochlear implant recipient: dealing with secondary sound. Our brains know to take that secondary sound and shove it in the background. We don’t really hear it unless we choose to. But when the implant is first turned on, the formerly deaf person’s brain can’t distinguish between primary and secondary sound and it all sounds like one big chaotic noise. That’s why restaurants, etc. are just nightmares for implant wearers until their brains are retrained. Jen still has trouble with certain noises really bothering her like the clang-bang of pots and pans which actually hurts, she says.

        So sorry to read of your hearing problem, O. Babe. And, believe me, I know how people don’t easily adjust their communicate style when talking to a person with hearing impairment other than to maybe YELL a little bit. People ask why Jen can hear me so well. Well, first of all I get her attention. And then I speak slowly and clearly and make a real effort to e-nun-ciate. You can’t just mutter something on the fly and expect her to hear it, nor you, I would imagine.

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      • Outlier Babe says:

        Oh, that is too bad about the Jen and those pans–I understand. My stupid Asperger’s makes me have to put my hands over my ears when fire engines and ambulances go by, which used to embarrass me, but now… Eh.

        I am actually fine, in-person with many people, or when actors face front, because I use lip-reading to augment. It is better outside southern Cal, though, or away from the tonier Westside, because a frequently-encountered preferred speech pattern here is to speak with minimal lip movement, Joe/Jane Cool-style. Really affected, and irksome.

        Yes, enunciation is the key, pronouncing words most care-ful-ly 🙂

        Liked by 1 person

    • Outlier Babe says:

      Dear Barbara,

      As everyone who has come before has expressed, this is a beautiful and moving post, perfectly said. I am so glad that one of the great burdens you and Jen carried was able to be lightened when that salesperson acted exactly the way we all should act every day. He and most of those who do evil each day lay their heads down at night with the same lightness of being, but I believe that good and bad ripples spread from our actions just like ripples from pebbles in a pond, and that the good acts produce the stronger effects.

      Your own words and acts I am sure are producing their own.

      –O. Babe

      P.S. During a mini-course in Ameslan in college days, the instructor told us on the first day that surveys of hearing, sighted people showed that most, when asked which sense they would choose to lose, if lose one they must, would prefer to be deaf rather than blind. She said that during the course, we would learn that deafness was a far greater handicap (we were not P.C. in those days): Far more isolating, making it much more difficult to get tasks accomplished that sighted and hearing people, or even blind and hearing people, take for granted.

      We scoffed. Yet were all convinced after a couple of weeks of class and our first meeting with our first community of deaf people.

      Things are better now than then, with the internet, and techno-tools, but as you well know, the hearing still underestimate the isolating effect, and the literal danger at times, of profound hearing loss.

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      • You bring up something, O. Babe, which I chose not to discuss in the post as it wasn’t relevant to the particulars of this part of Jen’s story but is something to which I’ve given much thought. Years ago if somebody had asked me which disability, god forbid, I would choose, it would have been a no-brainer. Nothing could be worse than being blind, right? I don’t think so anymore. Oh, that was driven home to me over and over as I watched Jen slowly sink into the world of utter silence. I mentioned in an earlier comment that I wore sound-deafening headphones to try to get a feel for what Jen was going through. One hour was all I could take. Everything was so much harder. I got dizzy and off-balance and felt so terribly disconnected. We rely on our hearing for everything that keeps us grounded and aware of our surroundings. And as you so astutely observe, the danger!

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      • Outlier Babe says:

        A friend years ago–we’re no longer in touch–had a young profoundly-deaf daughter–deaf since birth. This nine-year-old was playing kerb-side when a construction vehicle began backing up with its “beep-beep-beep!”. The driver spotted the girl, but continued backing as he began shouting at her to “also” get her attention.

        He was so unused to thinking in terms of unhearing being in the realm of possibility that the girl was almost crushed before her mom, my friend, screaming from the house, scooped her daughter out of the way.

        The driver was horrified at himself–at what he had almost done–merely because we all assume we all hear.

        I frequently walk on a path shared by bikers who race at car speeds. Some say “Left!” or ring a bell to announce their approach, but take no heed when I cannot shift to my right because of missing pavement (there’s a steeply-dropped bank), or a branch. I often think “What if I were deaf?”.

        There was a 14-yr.-old biker, riding at these speeds, son of someone in our circle, who killed a woman pedestrian younger than I. It was early, dark–I wonder if she “just” did not hear him coming.

        Again, I am so relieved for you and Jen that she will be spared the absolute worst of this.

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  41. What a beautiful story, Barbara. I’m tearing up and smiling all together. You prove again and again the power of persistence, stubborn hope, and a devoted mother’s love. Merry Christmas, and I hope everything is aligning for a happy holiday for all. Hugs, Elizabeth

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  42. Aww, what a sweet story! You brought me to tears. Jen is so lucky to have you for a mom! HUGS to you both! Merry Christmas! ❤

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  43. Barbara I have been trying to think of just the right words to say to you but I can’t find them. I can’t make them perfect like I want them to be. I want them to be perfect because I am so happy to have found you this year. So all I am going to say is that my heart goes out to you, your Husband and Jen. I am teary as I type this but they aren’t all sad tears.. I am so thankful you have one another to lean on and I feel the incredible love you share. Merry Christmas to you and your family and wishes for a Happy New Year that is all you want it to be. Hugs to you all.. ♥

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    • Thank you so much. I think you have found exactly the perfect words because they come straight from your heart. What a lovely and sincere message which just makes my day. We are expecting a joyous holiday season this year and I am sending all of my best wishes to you and your CH at the Tiny Ten. Happy New Year, dear Pix.

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  44. Sitting here in front of the computer with goose bumps – and so many stories to tell. (Found you through Bruce’s blog). I teach creative writing, and one of my ‘students’ was a 40-something-year-old woman who lost her hearing when a child with a bad infection. Her hearing decreased throughout the years to the point that to hear in my class, she wore hearing aids that wirelessly worked with a speaker in the center of our writing table. It was okay, but not great, Then a year ago she got a cochlear implant. She can hear again! Slowly, slowly, as your daughter has experienced, sounds that she hasn’t heard in 30 years have returned. What joy!
    And what a wonderful writer/blogger you are.

    Like

    • Oh, this just brings tears to my eyes because I know where your student has been and the wonderful path she is now traveling. Thank you so, so much for leaving me this comment; I NEVER tire hearing of stories like this. And I so appreciate your generous comment about my writing and the follow. Wow! You just made my day.

      Liked by 1 person

  45. lbeth1950 says:

    So glad things are looking up.

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  46. This is such a moving post, Barbara. I’m so sorry for what you and Jen have been through, but I’m also glad she has recovered some hearing. Thank you for sharing this part of your life.
    Joni Mitchell’s River is a favourite of mine too.
    Jennifer xo

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  47. ChristineR says:

    I can relate to this on a superficial level, Barbara, especially not hearing birds and rain and the wind like I could. I have otosclerosis and first noticed I was going deaf in my early 30s. If it wasn’t for a plastic stapes (stirrup bone) the size of a grain of rice I’d be almost deaf now in the right ear – like I am in my left. I didn’t have a spare thousand around to replace my hearing aide when it broke years ago, and it was too old for repair. I don’t need to hear everyone, but I’ll get another hearing aide when I have to, though. When it gets too hard. 😀 Thanks for sharing, Barbara. I’m so glad your daughter can converse again.

    Like

    • Oh Christine, I think you can relate to this on much more than a superficial level given the extent of your hearing loss. My heart goes out to you because I know how very hard it is. I had not heard of otosclerosis before. Do you have any idea if cochlear implant might be a solution? Sorry, don’t mean to be a vigilante on the topic but if anything could be done that possibly your insurance would cover, wouldn’t it be a miracle? If ever I can answer any question for you, please don’t hesitate to email me privately. Happy New Year, Christine.

      Liked by 1 person

      • ChristineR says:

        I have become used to it, to a certain extent, but it is frustrating sometimes. Otosclerosis is when the bones in the ear fuse together. It is thought that is what sent Beethoven deaf in his thirties. In the 1980s, I had a stapedectomy (a plastic stirrup bone put in) for free under our Medicare system and I purchased a $1000 hearing aid at the same time. Magical! It’s been 10 years (I think) since I had a hearing test and at that stage my right ear – the one operated on – is still pretty good, but the left was bad from a combination of age and otoslerosis and one should never have both ears operated on in case sudden pressure causes both stirrups to part company! I will be deaf enough eventually, for the implant, and then I can have it done under our Medicare system again. I don’t bother with health insurance, as I cannot see the need for it. If I have a heart attack I get treated just like everyone else. The only benefit for other surgery is you can be fast-tracked if you have private insurance. We have insurance for ambulance and the car and the house and contents, that’s only common sense. Anyway, a $1500 hearing aid in my good ear will keep me going for ages. I can go to a place that will let me pay it off. I think I’ll need to, if I’m going to be a famous author (tongue-in-cheek). I actually have a cheap amplifier from China (via eBay) so I can hear my doctor – sometimes you can’t bluff and really need to catch every word said, but it doesn’t sort background noise. Thanks for your concern, Barbara. I will go and be assessed again this year, methinks. Nothing to lose. ❤

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  48. cat9984 says:

    I didn’t even know that could happen. It has to be frightening to not really understand what is going on around you. And it’s just as bad for the parent most of the time. I’m glad you’ve found at least a partial solution.

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  49. While not perfect, music sometimes improves over time. What I hear best is classical, ballads, jazz and simple uncomplicated music. I will celebrate 10 years of “hearing” next month. Another improvement I received was hearing better in noise over time. I don’t know what brand your daughter has, but if it is Cochlear brand, there is a convention in February for people who celebrate this gift of hearing. Their website is http://www.cochlear.com. Please tell her to be patient. With every mapping, she may still receive improvements. A miracle for sure.

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