Hearing loss, failing eyesight, and the struggles we try to hide

Let’s talk about discrimination. Not the racial type: I’m talking about the ability of human hearing to discriminate, to distinguish the all-important but often whisper-subtle edges of what most people experience as the familiar sounds of vowels and consonants.

For some of us, consonants are especially hard to discriminate among spoken sounds. Their delicate wisps of tone fade or disappear altogether for people with even mild to moderate hearing loss. With more profound loss, whole letters vanish. The hearing challenged may hear “uv” instead of “love,” for example, or “ach ow” instead of “watch out!”

Lost letters can matter greatly. These critical speech sounds are what make spoken language intelligible, meaningful, even transcendent—or not.

“Never again would I trust that I knew anything important about someone — or, really, anything at all — from what was evident on the surface.”

frank bruni, the new york times

Hearing loss is not always a loss of loudness, as most people assume, which is why hearing folks tend to shout at people who don’t hear well. The more common reason a person’s auditory understanding is compromised is the insidious fading away of consonant and vowel sounds in the words they hear—or more accurately, barely or don’t hear.

Face masks, rules, and hearing loss

I only mention this because of my own severe and long-term hearing loss, and because we are all wading through a pandemic in which face masks make understanding treacherous even for people with healthy ears, and all the more so for the hearing-impaired. Masks muffle vowel and consonant sounds that make speech comprehensible, especially when hearing is already a challenge, and understanding suffers far, far worse.

It’s a kind of reverse discrimination, inappropriately treating the wrong people the same as everyone else.

I want to explain to the unaware why this unique masking situation is so difficult for those of us whose middle and inner ear architecture is flawed or eroding.

In my case and that of my brother, the tiny hair cells (cilia) inside the cochlear spiral hidden deep in our inner ears, have been progressively weakening (it’s called a sensory-neural loss). This often inherited degradation means the wounded waving wisps of cilia, which electrically transmit sound through the auditory nerve to the brain, render spoken language progressively muted or garbled.

That’s where the consonant complaint comes from. What cilia do is rhythmically sway in fluid when excited by incoming sound. The auditory nerve translates these motions into critical B, C, D, F, G tones plus all the other language vibrations the brain then interprets. In my and my brother’s cases, our cilia have lost their sway.

The ain in ain

So “the rain in Spain lies mainly in the plain” for some people sounds like “uh ain in ain ies ainy in uh ain” as their hearing challenged brains, with varying degrees of success, try to instantly fill in the blanks as people speak. That explains the blank look the near-deaf often display before recovering enough to act like they actually heard what they hadn’t.

Pretending to have understood may seem silly to “normal” folks, but we hearing impaired have discovered it’s far more awkward for everyone involved if we ask that everything be repeated—especially since we know there’s a good chance we won’t catch it the second time either, especially if we’re in a loud bar at happy hour, or live at the Super Bowl. So we hushed-world people have learned we really must do something, because blank faces alarm people. A (fraudulent) knowing nod and (secretly-pained) smile go a long way toward salvaging a fraught moment for the normals dealing with unnormals. Trust me. It’s just better for everybody.

But these trials are not always so minor.

Late last year I was diagnosed with Stage V prostate cancer. Yet almost worse than the disheartening diagnosis was trying and failing to understand through N-95 face masks and sometimes additional plastic face shields what my urologist, surgeon, oncologist, and their assorted staff tried to earnestly explain to me about my very dangerous condition. It would have been a good time for good discrimination, with people talking differently (maskless) to me than to others.

I even wrote a letter to the head of the hospital corporation administering my care. I respectfully asked that they make an exception and allow my docs to talk mask-less to triple-vaxxed me.

That was months ago. Never heard back.

So my fallback was to have my very accommodating wife accompany me, as if I were a 3-year-old, to these medical appointments to tell me what I wasn’t hearing. The aggravating thing is that when people don’t wear masks, my hearing loss is mostly not an issue one-on-one in fairly quiet environments, like a doctor’s office. But it sure is when masks are involved. To be fair, though, some docs humored me and removed their masks while certainly risking censure by their employer for breaking the hospital company’s sacrosanct always-mask policy. Others refused outright. One specialist who unmasked at the first appointment declined at the second. It’s a crapshoot.

10 million-plus Americans hear badly

All this is beyond annoying, of course. What if I missed an instruction such as, “Don’t do [such and such] or the cancer will return with a vengeance”?

But it’s not just about me. According to the National Institutes of Health (NIH), about 15 percent of U.S. adults (some 38 million citizens) today “suffer from some degree of hearing loss,” most experiencing difficulty communicating. More than 73 million people will have hearing loss by 2060 as the rate of increase in hearing impairment compounds moving forward as the nation’s population skews older.

That represents a mountainous pile of miscommunication, misunderstanding, and generally well-intentioned discrimination, as well as attendant psychic strain.

In his regular New York Times newsletter essay (available only by subscription) this morning, opinion writer Frank Bruni agreed:

It happens almost every day: A friend, an acquaintance or a complete stranger confides in me about a past struggle that only a few people in his or her life are privy to, about physical pain or emotional turmoil that almost nobody sees.

Bruni said when he learned he “might go blind” a few years ago, he wrote about it, and the account of his ordeal “seemed to resonate with readers in part because my condition exemplified a public-private disconnect.”

The ‘public-private disconnect’

The “public-private disconnect” refers to the habit of Americans and probably people everywhere to keep their most daunting personal struggles private to avoid discrimination. Maybe this is because these ordeals loudly if unjustifiably signal failure or inadequacy in a success-oriented, capitalist, perfectionist, self-reliant culture.

In his journey of acceptance of his potentially-impending blindness, Bruni said others have been more open with him about their trials and tribulations. He says he was staggered to learn how even some of his most confident-seeming and successful friends and acquaintances admitted to him that they wrestled with frightful, often intractable, demons, both physical and psychic.

“Never again,” Bruni wrote, “would I trust that I knew anything important about someone — or, really, anything at all — from what was evident on the surface.”

So be kind. Avoid discrimination

That strikes me as a true and essential social philosophy. It reminds me of a quote by the 19th-century Scottish minister and fiction writer Ian Mclaren: “Be kind, for everyone you meet is fighting a hard battle.” Even the most beautiful, talented, seemingly confident, and privileged among us. Especially those. I wish I had a dollar for every time I learned that a famous writer or actor admitted living in dread that their fans and colleagues would one day discover the truth: that they are frauds.

So, be kind. Everyone isn’t necessarily as blessed, as preternaturally flawless, as they seem.

And if you know someone who doesn’t hear very well, please don’t shout at them. Make sure you have their attention. Look directly at them, not away. Keep your hands clear of your mouth—it’s not a perfect skill, but we do lipread. Then just talk normally, or maybe just a tad louder. And don’t forget: hearing aids only partially help.

And if you’re a doctor and a hearing-impaired patient asks you to remove your mask, please comply (without rolling your eyes). I believe it is one case where breaking hospital policy is a morally defensible choice, an honorable act of civil disobedience.

It’s about discrimination, right? That’s a joke.

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