I don’t like talking about this secret, but circumstances of late have forced me to come out of the closet so to speak. The theory is as a young child my siblings and I had the hard measles. Our house was quarantined, and my mom went about soothing itchy red bumps with sticky pink lotion, and bringing down temps with cool rags on feverish foreheads.
My mom checked my temperature and found it to be over 104 degrees and she swooped me up and put me in a bath of cool water to bring it down. I don’t remember it at all, it’s just the story I’ve heard. I’ve heard it a bunch of times, told the same way, ending with tiny me shivering in a cold bath and my temp returning to normal.
Thing is, my hearing never did.
That high temp damaged the nerves in my ears, and from then on, the nerve damage in my ears has steadily worsened. Or so the theory goes.
No one knew that, not my mom or dad, or siblings or friends, and later my husband, children or coworkers. The loss at first wasn’t so bad, I guess. I just appeared to not pay attention, to be a dreamer (well, that’s still true) and to be in my own little world (sorta still true, too). I was a bit of a frustration to the people around me because I was not following directions like I should. Here’s the thing that I didn’t get, to this day I don’t know a single person who pays attention better than me. I just felt like I was dumb, and soon learned that accepting that would make my life easier. Dreamer, silly, and then later, ditsy blond. Monikers that suited me.
In high school I learned why. They started checking hearing at school, and I failed my first test. I was so shocked and embarrassed that when the school nurse asked me if I had a cold, I lied and said I did. I was to get rechecked, but soon fell through the cracks. I had two more tests my final years in high school, and I got smart and watched how she flipped switches under a box and as other kids’ hands went up accordingly. So, I did the same, watching intently raising my hands according to her movements, and not so much the beeps in my ears. Not such a dumb blonde after all, huh?
When I began working at the hospital I carpooled with a lady from our town who’s known me since I was a young child, and I told her about an incident where I didn’t hear something. I was just about to tell her that I had hearing loss, confess you know, when she said, and I remember the exact place we were driving when she said it. “It’s not that you didn’t hear her, it’s that you didn’t pay attention.”
And I sat there still as could be watching the cold winter road ahead. I had not found a safe place to share my secret after all.
This is all a bit dramatic sounding, I know, but I’ve never told the story quite like this, out in the world. But the story needs telling, because my hearing loss is as much about me as my hair color and eye color, and the sound of my voice and my pointy chin and nose.
I love when people say that I’m the best listener they’ve ever known. I hear that a lot, ironic, eh? But, I do listen well, I do care to hear everything, to know the stories and to understand, because so much of what I know comes from body language, and I can assess how someone feels better than most people can hear the words they say about it. And that matters to me. My hearing loss isn’t about my compassion for others, it’s about how I know how others feel and I don’t have to have perfect hearing to know.
When I was 30 we were watching Rain Man. You know the film, Dustin Hoffman has autism, and mumbles, and Tom Cruise is his brother. Well, we watched that film and I sat mere feet away from the television to try and hear Dustin Hoffman’s dialogue and couldn’t make out most of it. Hubby sat across the room and heard every single word. My heart sunk so deeply into my gut and that’s when I knew I had to do something, so I confessed my hearing loss to my husband, and even he had to admit there was something wrong.
And Richard Dawson’s voice? “And the survey says”… yah, forget about it.
There’s no rhyme or reason as to why my hearing is getting worse, and why it got suddenly worse after the births of my children. When I told one of the ENT (Ears Nose and Throat) docs at the hospital that I needed to come in and get tested for my hearing, he wasn’t buying that I had hearing loss at all. I was pretty darned convincing my whole life, but being convincing that I can hear doesn’t mean that I can.
So, I got my first aids and they were big inside my ear — tiny hearing aids were for the vain said my audiologist, and I asked, “Oh, do you have hearing loss?” And he said, “no.” And I said, “I thought not, because you have no idea what it feels like to have hearing aids sticking out of your ears, especially when carrying your tiny child in your arms.”
Jerk. I moved on, a little compassion at the first would have gone a long way, let me tell you.
Which, I guess is why I write about this. There’s such a stigma about hearing loss, and I see so many people with it. Definitely a sign that we Baby Boomers stood in front of the speakers at Rush concerts where the sound was so loud it blew your hair back.
And all you people that grew up after us? Yah, those earbuds are awesome, but the decibels on those suckers are wreaking havoc on the nerves of your ears.
Plus, I can tell when you can’t hear, because I nod the same way when I’m not hearing and am tired of asking someone to repeat themselves..again. It sucks but, why if you are given the choice to hear, say to wear hearing aids, wouldn’t you opt for hearing? So many of my generation don’t.
These aids I wear now are a far cry from the aids I wore as a young mom when my 5 year old son was so excited and wondered when he’d be able to get his own pair of hearing aids. He thought all moms wore hearing aids, it wasn’t until he was in fourth grade when he came home from a buddy’s house shocked that Mark’s mom didn’t wear hearing aids that he understood that I was different.
Two years ago, I had a sudden hearing loss in my left ear. Bam! Doctors prescribed rounds of antibiotics that made me sick as a dog and yet hopeful that they were right, the sharp drop in my hearing in that ear was caused by a sinus infection. Sigh. Not to be.
So, I headed to the Hearing Institute of Chicago, and with a twang of a tuning fork behind my ear (to determine bone conduction hearing loss, which is sometimes surgically repaired) it was declared that my hearing loss was sensorineural (nerve damage), permanent, and my hearing future uncertain. No cure, no treatment, no anything. (You can read about that day here.)
Then last February, my left hearing aid went on the fritz. It was Valentine’s Day week, and for a manager of a chocolate shop, it’s one intense week, so I dropped the aid off at my audiologist’s and asked that they send it in for repair. Later, my audiologist called to say that the aid was working perfectly. It wasn’t my aid that wasn’t working, it was my ear. Deep sad sigh.
I was devastated.
The secret was really out now, not that it wasn’t “out there” more and more since the first horrendous loss the year before. I had to work harder than ever to hear, and let me tell you, it’s exhausting. I felt the pity of people around me, which is totally the worst part of it all, I hate it. I hate when people talk REAL LOUD to me, because I’m not used to it and it makes it harder for me to hear because I’m caught off guard. Embarrassed.
I retreated inside myself trying to figure this whole thing out while trying to maintain some normalcy with increasingly abnormal hearing. I peppered myself with questions, and maybe I questioned God, too. Why my hearing, will I hear my someday-hopefully-to-be grandchildren’s cries? Would I go completely deaf? Would I lose my ability to hear my beloved music, and my husband’s laughter? Would I be able to enjoy a meal at a restaurant with friends? Would I need lights to indicate my phone ringing, and someone at the door? Would I have to learn sign language? Would I not be able to do my job? What was the purpose for all of this? I was utterly distraught and sad.
I’m a faithful woman, you all know it, but I also felt that I had some control over my life, but this? I had no control. I could not protect my hearing any more than I was, I could not do anything within my power to preserve the hearing I had. I began to understand that it’s not my lack of hearing that I needed to concentrate on, it was what I could hear.
What a revelation, seriously, since that young 16 year old girl in the library room raising her hands to real and perceived beeps in her ears I have worried all day long about what I couldn’t hear, and more importantly, how I would protect my secret. I didn’t want to be different, not ever, not even in a good way, but I was and I am.
All of a sudden, just like that, “snap” it was what I could hear that I began to focus on, and it’s sweet. I love it all. I’m thrilled to death when I hear my twin sister sing at church, and when I hear the cat purr, or my husband’s soft snores and the birds and the wind and the rain against the windows. I loved hearing my little great nephews and niece talk to me as they spent Thanksgiving week with us. Deeply and profoundly, I am grateful.
I had surrendered.
Scary word, surrender. I know a whole bunch of people who think it’s the scariest word in the English language. Surrendering to a life uncertain should not be such a big deal, because, life is uncertain.
So, will this story end sadly. I don’t like sad endings, I really don’t. I want to walk away and think there’s hope left to a story. I know I write the truth about life and sometimes it’s sad, and I also know that there will be many who read this and know me who have no idea that I have hearing loss. That I am hearing impaired, and they will be reading this, and maybe a light will go on and they will remember when I didn’t seem to catch something, or they will say like that ENT so many years ago, “No way.” But, it doesn’t change that my hearing loss is real and it’s something that makes me who I am, and no less of a gorgeous middle-aged highly capable woman (smile).
So, the sad ending, right? This past Tuesday I had to have my hearing checked. My hearing aid warranty was due and we didn’t want to insure the left aid if it really was just a glorified and expensive ear plug as it seemed to be nowadays. While the surrendering I’d been doing the past nine months had brought tremendous peace, I am still no fan of the hearing test. First of all, I have to do everything I can to not cheat. I’m so used to cheating on hearing tests, that I automatically want to cheat again. Thankfully, the tests of today are much more sophisticated than the ones in the library in high school. It’s much harder for me to cheat. I also try to remember to ask my audiologist to fool me, don’t do the expected. Another way to not cheat. Seriously, the cheating thing is INGRAINED in me when it comes to hearing tests.
Second, I hate failing, and no matter how hard I try, I will fail a hearing test.
The test began, right ear first…beep, beep, beep…hand raising, trying not to cheat, whistles and toots and honks, hand raising at each beautiful sound that reached my ear. Because, remember, for the first time ever, it wasn’t what I couldn’t hear, it was about what I could.
Then the left ear. I said, “This shouldn’t take long,” and smiled despite my tears. Beep, toot, honk…hand raising, some tentatively, some confidently, and then my audiologist came on the intercom sounding completely perplexed. “Bonnie! There is no change from the test two years ago!” We both looked at each other for a time.
Turns out the left aid had just changed its setting, how we don’t know. It literally was like an earplug. When she reprogrammed it, all those sweet sounds I’d been missing came through loud and clear. We were amazed.
So, what was that? What were the past nine months about? I think it was God’s way of showing me that everything has a purpose, to look at my hearing loss in a new way. Maybe, to share it like I am now (in the longest blog I’ve ever written) and come out of hiding. I don’t know. I just believe it’s a little miracle, and I am so grateful that I heard it.