My Private Symphony

Even the dissonant parts of life can hum with meaning. Especially when your mind is wired to notice what others can't.

Centennial Chimes: “The Bells” International exhibition, Philadelphia 1876.

We were singing at James’ third birthday party when he suddenly put his hands over his ears and burst into tears. I mean the song is terrible and our rendition made it worse, but it seemed a rather over the top reaction. And it was out of character. James was such an easy child. He preferred to play quietly with blocks, and at 8pm he would often just disappear from the family room - and we would find him snuggled in bed. That was until Tim opened a bag of cookies, and suddenly James’ blond curly-haired head would appear at the bottom of the stairs.

“I think he heard me open the bag,” Tim kidded.

He also had frequent, worrying headaches. Tests showed no reason for them.

Between his third and fourth birthdays, we were concerned about his inability to pronounce words. He had five phonemes and was diagnosed with a severe speech disorder. The childhood intervention program in Colts Neck, NJ, was phenomenal, and by first grade he was only missing his non-rhotic (absent) r sound. It wasn’t until first grade that we realized he needed tubes - that his ears were nearly 100% blocked.¹

His speech therapist wanted more testing. And we found out he had hyperacusis or “super hearing.” We didn’t really know what that meant and joked that maybe James did hear us when we bit into a cookie.

A couple years later, James had his hands over his ears.

“Daddy, make it stop.”

He was pointing at the ceiling in Alex’s room. It was summer, and the all the bedroom ceiling fans were on. None of us heard anything but the whirring of the fans. But James was insistent. The door to the attic was in Alex’s closet. Tim climbed a ladder, and armed with a flashlight, he opened the hatch. Apparently, that’s where the nation’s missing bees had been hiding. There were thousands and thousands of them. They had created not a hive, but a condo.

We were convinced now of James’ super hearing. And he let it be known that we were terrible at whispering. If we were discussing something in the kitchen, a voice would shout from upstairs, “I hear you!” No wonder that child had migraines.

But it got me thinking.

As a child, our basement terrified me, particularly at night. Mom would send me downstairs to take clothes from the washing machine and throw them into the dryer. I begrudgingly did, and like a soul pursued by an unseen assailant, flew back up those stairs. So it was out of character when at age 8, I woke up in the second-floor bedroom and willingly descended two flights into that dark, scary basement – to see water shooting out all around. I screamed for my sleeping parents. Dad came down the stairs to see his daughter at the bottom rung, and rushed past me to shut off the water to the broken pipe. Then he questioned why I was in the basement in the first place.

I guess I heard something.

As a broadcast communications major, my advisor had me do a paper on the multitude of English accents. It was easy for me to pick up the similarities between the Australian and Boston accents, and I can hear the rhotic r of Canadians who have Scottish ancestry.

Did I have hyperacusis?

The dentist drill sets my teeth on edge. So does the fan above my stove as well as the one in my bathroom. In fact, most background noise drives me nuts. And there is always background noise.

I am one of the roughly 25 million Americans who experiences tinnitus. I pronounce it tih-NITE-us, same as Dad, while my brother John pronounces it TIN-ih-tus. Both are correct.

It’s a sound in my head that does not come from an external source. If you don’t have it, it’s probably impossible to imagine having something akin to a drill, or the screeching of metal, in your head 24/7.

Just as there are two ways of saying it, there are a variety of different sounds people hear. I found a couple different sites that offer examples of what we hear. I tested all of them. The sample entitled “electric” made me wince in pain. My piercing sensation is a cross between the 7500hz and the tea kettle.

Missing from this list was the whoooshing noise of a washing machine that some complain about - but which, audiologists say is the easiest to treat. And contrary to what most would think, most tinnitus is not a hearing impairment per se. It is a neurological one. It is a hyperactivity within the brain that tells the auditory cortex that some stimulus is missing. And instead of being at peace with the missing stimulus, it creates a phantom sound.

My Dad had tinnitis, James and my brother have it too. New research says there are genetic links to some types of tinnitus - although it says that it is linked to men. (But that might be because they rarely study women.)

Somehow all our brains have decided that no noise is a lost opportunity.

My husband Tim is a very tall man whose voice can be booming. But when he is on his computer and his head is down, I can’t discern what he is saying. If I say, “what?” he will helpfully boom. But when he booms, I have to back away to avoid the pain of noise.

My tinnitus impacts my wallet in addition to my psyche. When I bought a ceiling fan for my room, it had to be noiseless. I found one, and it happened to have uber-cool retractable blades too. Of course it was more expensive. And when we needed a new dishwasher, with an open floor plan, I searched until I found a quiet one. That too was more costly.

It also impacts my sleep. Today I woke at 3am from the screaming in my head. I find that I can ignore the noise if I can concentrate on something. This morning it was Wordle. Fortunately, I fell back to sleep before I made a third guess.

Is there a cure?

Some of these unwanted sounds can be masked by hearing aids. My brother-in-law, who also has it, but who is not genetically linked to us, says it works pretty well for him. Dad had hearing aids, but it didn’t really mask the ringing. He hated being in crowds because he had to turn up the hearing aids to hear, which now created a shouting match with the ringing.

I went to an audiologist about 10 years ago, and found I had lost some higher frequency sounds. Are they really lost or are they masked, I wondered. Lost, he told me. Paradoxically, unlike my Dad and my in-laws who had their TVs blaring in order to hear, I have mine set at barely a whisper. I just follow along with subtitles.

New research suggests that we might be able to retrain our brains to stop interpreting silence with noise. I put off going back to an audiologist. Like Schrödinger's cat, there could be a cure and no cure.

But, the ringing became louder, interrupting sleep, and was impairing relationships. (My husband was tired of me saying, “What?”) I needed to try to fix it.

A year ago, I went back to an audiologist and swallowed my vanity, and decided to invest in hearing aids. He suggested I wear ear plugs when I dance to protect the cilia in my ears. Cilia are hair-like receptors that are crucial for hearing and balance. Some believe that when cilia are damaged, tinnitus results. I don’t know that I buy that. But I started using ear plugs just in case.

I would love to tell you that the hearing aids worked. Unfortunately, they did nothing for the ringing. They are perfect for when we are with friends or when we go to the theater. They amplify the voices above the din in my head. But it’s rare that I wear them to a restaurant, the amplification of all noise is too unbearable, and yep, cause headaches.

Whenever I hear "Happy Birthday," sung by a cacophony of bad voices, I think of that poor child at three, covering his ears and crying. Back then I thought it was fussiness. I know better now. He was in pain, and we didn’t empathize - because we couldn’t understand it.

How many people do we meet who carry things we can’t see, hear, or fully understand?

My grandmother had a saying (which she insisted sounded better in Italian):

If troubles were pebbles—and we cast them into the street—we’d eventually pick up our own again.

Maybe what’s familiar, even when painful, becomes its own kind of comfort.

My cousin Tom (on Mom’s side) told me he has tinnitus too. He saw the movie “Another Earth,” where a cosmonaut hears a loud intermittent clang. In order not to lose her mind, she decides to fall in love with the sound.

“My tinnitus is my own personal night time or nap time white noise machine,” Tom tells me. He claims it doesn’t quite cancel it – but it doesn’t make him crazy.

I’m trying. Really trying. Trying to listen to it as some sort of symphonic gift of bells—albeit a boisterous one.

Maybe this isn’t just about sound. Maybe it’s about how we learn to live with what no one else can sense. At the very least, when I wake in the morning, it may not be to silence that greets me—but presence. I’m not alone, I have my bells.

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What I am reading now:

Here’s how my book selections work:

• A friend recommends a title

• I look it up in my library app.

• Despite having 112 readers ahead of me, I put a hold on it

• I promptly forget the title.

• I download it when it pops up six to eight weeks later, and I have no recollection of it.

  

That sums up what I knew about Ruth Ozeki’s “A Tale for the Time Being,” other than my friend Diane told me I would love it. In a journal that looks like it is a book by Proust, a Japanese teen writes about being bullied. She launches into the ocean where it is found by a writer when it washes up on the shores of British Columbia. Only a smidgen into it, but I can feel the anxious energy on every page as it passes between two narrators.

1. In case you were wondering, the test they do for babies for hearing is a clap of the hands. If they startle their hearing is considered fine. Because he had “super hearing,” he was able to hear the clap — but not discern words - until he got the tubes.