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.

One 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