And Then There Was None...

To a hearing person, the loss of sound is frightening. Panic worthy. As much as my cochlear implant and hearing aid help, there are times that wearing them is painful to my ear canal and head and I need small breaks without them to recover. Having "impaired" but viable hearing in one ear helps during these times. I can navigate the ins and outs of my day at home alone with only the residual hearing I have in my better ear.

I have longed feared that another sudden sensorineural hearing loss would rob me of what's left, even though my audiograms of that ear have remained relatively stable for several years now. I rely on that ear for better speech comprehension, media streaming, and music. My CI "helps" me hear, but it isn't really good enough for me to comfortably make it in my hearing environment alone.

Last week while spending a week at our Colorado cabin, I noticed my ear popping and equalizing the pressure as normal, but it was affecting the clarity with which I could hear, and there was an annoying ache deeper inside than I could explain. I could tell that my ears were compensating and I was hearing more from the CI processor than my hearing aid. I avoided playing a game with the family since I knew I was having trouble hearing. It was only after I retired to my bed to read some and I took off my hearing devices to experience the full impact of the dread I have always feared. Complete and utter silence. I could not even hear my own voice.

Panicked, I hastened my husband upstairs and he brought along my daughter, a physician's assistant in an ENT specialty. Without her instruments, she could only try to reassure me that with the earache, it was likely an infection or eustachian tube disfunction.  I was lucky to get an appointment the next morning with a nurse practitioner at the local clinic in an adjacent town. Expecting that this small town clinic would have no experiences with sudden sensorineural hearing loss, my daughter came with me and examined my ear to find a retracted eardrum. Even when I "popped" my ear, it remained retracted and all sound above a slight vibration and buzz was gone. She suspected that it was a conductive loss because of the retraction, but given my history, she couldn't be sure. The only course of treatment was to receive a high-dose course of steroids once again, which is the prescribed treatment for both conductive and sensorineural hearing loss. She consulted with the nurse practitioner about the proper dose. Meds were prescribed and we were on our way.

4 days later, I have hearing in that ear again. Not as much as before, I can tell, but enough that my panic has subsided. I will see my otologist in 3 days for an audiogram. That will provide more insight into just what occurred last week. I am confident that I have not completely lost this ear, but I will most likely need a hearing aid adjustment to compensate for the event.

What surprised me through this time is how reliant I had become on my better ear and using only my hearing aid for my day-to-day tasks. I honestly don't like the CI and I don't wear it unless I will be in hearing environments that warrant better hearing. What I found out is that while my other ear has been recovering, my CI is better than I'd thought. I've done ok with it alone, if not as good as both ears.

For now, I have 6 more days of Prednisone treatment working to stop the attack on my ears and hearing. And I have a CI that I must don from sunup to bedtime now if I am to hear well enough to get through the day. I do not embrace this deafness willingly or graciously. It is the lot I've been dealt. And all I can do is deal with it.

I will keep you updated when I know more.

I Wish You Deafness

My wish for you is deafness if only for a day. Hard-of-hearing, impaired, disabled, whatever it's called. Then maybe you'd understand.

I wish for you a deafness. Silence or muffled. It really doesn't matter. I wish for you the struggle I face every single day.

I wish for you a hearing aid. A cochlear implant. A bone-anchored hearing device. I wish for you the tinny, squeaky amplification of I-can-almost-hear-it-but-I've-no-idea-what-it-is. I wish for you technology that's imperfect at its best. I wish for you the scars and pain of things inside your head.

I wish for you the squealing feedback when people give you a hug. I wish for you the dying batteries in the middle of a conversation or a movie or lecture. I wish for you the continual adjustments to make your aids "just right" and the feelings of disappointment when they most often fall short.

I wish for you the extra packs of batteries. The chargers and the cords. The handheld devices that fill your pockets and purse. I wish for you the streamers and mics and FM devices and remotes. I wish for you a theater that actually has been looped so the telecoil in your aids might actually be put to use. I wish for you closed captioning that actually reads like the script. No misspellings, no missed words, and synchs with the actors' lips.

I wish for you the cost of buying and maintaining and repairing and upgrading your devices, and the insurance to cover the bulk. The audiology and surgeon appointments. The dreadful sound booth and beeps you may or may not hear. I wish for you those days you hate when you're told you're doing well. But deep inside you know it's fake. So you smile and walk away.

I wish for you the scaly ear canals from wearing a mold all day. I wish for you the floppy ear and little red sores behind you ear where your processor rubs away. I wish for you the wig tape to hold little things in place. The retainers, the ear hooks, the mic locks. I wish for you the ear wax that clogs your mold and mics. The wax guards and mic protectors and ear gear to keep the gunk at bay. I wish for you the magnet that often leaps away - to the umbrella, the car door, the costume jewelry of your friend while giving a hug, or simply falls to the ground.

I wish for you the exhaustion of trying so hard to hear. The missed conversations when your brain is too tired. I wish for you to ask others to repeat again and again, knowing you may never understand. I wish for you tenacity so that you may never give up.

I wish for you the noisy restaurants, the too-loud background music, the loud conversations at the table across for you. The laughing, the crunching, the dishes clanking, the order taking, the babies crying. I wish for you that earnest desire to decipher the words and understand your dinner companion among the clamorous noise.

I wish for you the rolled eyes and sighs and oh-my-goshes. The it's not that important or forget it when you struggle to hear. The you never listen and pay attention and are you wearing your hearing aid today? You're being ridiculous. You're stronger than that. Quit moping. Get up and join the game. I wish for you that last nevermind that always makes you cry.

I wish for you the chuckles of friends who laugh at your expense. Time and again you ask, "Did you say Amanda or banana or sandwich?" I wish for you those who answer questions directed at you before you get the chance. I wish for you those people who think that you are being rude. Who think that if you'd just paid attention, you'd know just what to do.

I wish for you the mumblers and those who don't speak up. I wish for you the accents and poor enunciation and those who chew gum and eat while talking to you. I wish for you the shaggy beards that hide the lips you read. I wish for you the ones who shout from other rooms or talk as they walk away. I wish for you those who bemoan why you didn't hear. If only you'd been a better listener, you'd know what they had said.

I wish for you understanding. To know how hard it can be. I wish for you patience when I'm slower to respond, or answer, or contribute. I wish you just knew it takes time to hear and understand you.

There's so much more I could wish for you if you were deaf for a day. But most of all, I'd wish for you a world that is kinder than the one that we have now. I'd wish for a place where empathy and lenience and compassion for others' differences were not only evident, but demonstrated without thought, even for those like me. Deaf, hearing, or somewhere in between.

That is my wish for you.