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Keep it down

I attended the National Post’s lively 8th anniversary party in Toronto last month. Alas, the band was far too loud for my oldie taste. Mindful of encroaching hearing loss, I left early with a deeper appreciation of Gulliver’s sensory trials in the land of Brobdingnag.

But there is a worse acoustical fate than hearing loss, or even, in some extreme cases, deafness: Hyperacusis. Far from the gift of Superman-like sensory keenness implied by the prefix “hyper,” the adult-onset auto-immune condition—defined as “a collapsed tolerance for sound”—renders one pained and helpless in a noisy world.

“The world becomes shocking to you,” says a sufferer who, after 30 minutes’ exposure to the roar of a nearby power washer, plunged from normalcy to hyperacustic despair. He likens the torment of noise falling on his hyperacustic ears to the sting of a comb brushing burned skin.

To a hyperacustic, even 50 decibels (a whisper) can be painful. The rustling of newspaper pages hurts. A loved voice can be nails on a blackboard. Startling high-decibel “screams”—sirens, car alarms—are agony. Dental work is torture.

Ear protection—muffs or headphones—provides some short-term relief. But in the long-term, such measures encourage even greater auditory sensitivity, and so must be used sparingly.

Hyperacusis can be triggered by driving without a muffler, Meniere’s disease, antibiotics, loud music (ahem), and—notably—high-decibel MRIs. Susceptibility is rare, idiosyncratic and genetically mysterious.

Invisible and medically undetectable (hyperacustics excel at hearing tests), the condition often is misdiagnosed as a purely psychological ailment. Shuttling between equally uncomprehending doctors and psychiatrists, the necessarily phonophobic victim is socially isolated, frequently unable to travel, work or properly parent. Concerts, movies, crowded restaurants are anathema. One’s own voice is an auditory assault. In a word, hell.

In her book Tortured by Sound: Beyond Human Endurance, extreme hyperacusis sufferer Carol Lee Brook writes: “[A] cat meowing was like a lion roaring, my own footsteps sounded like those of a dinosaur, the water from the faucet resembled Niagara Falls … I wanted to die.”

Oregon audiologist Marsha Johnson runs a unique practice, catering solely to hyperacusis and tinnitus sufferers (hyperacusics often suffer both), of whom there are perhaps 50 million worldwide. Sometimes she travels to housebound patients for treatments. She has talked down a suicidal man with a gun to his head, another pacing his garden with a rope in hand. Johnson says she is frequently consulted by Canadians. She comments that if only Canadian ear-nose-and-throat doctors included a simple Loudness Discomfort Level (LDL) test in their examinations—they almost never do—they would cut directly to the chase.

Hyperacusis is an orphan disorder, too rare to motivate pharmaceutical research. For most sufferers, partial relief and progress come with long-term treatment, costing about $3,000, known as Tinnitus Retraining Therapy (TRT), which uses “sound generators” to gradually recondition the ear to everyday noise.

Samuel Johnson said deafness is “one of the most desperate of human calamities.” That was true in 1750. Today, sign language, a handicap-conscious public, and “deaf pride,” coupled with deafness-specific institutions such as Gallaudet University in Washngton, D.C., (which recently ousted a new president for being insufficently committed to deaf culture) have diminished the erstwhile curse of deafness. In today’s ubiquitously cacophonous environment—jets, jackhammers, jailhouse rock—Johnson might argue for hyperacusis as an even greater auditory calamity.

But modernity also provides a grace note. Just as sign language shepherded the profoundly deaf fully into the human estate, the Internet shields extreme hyperacustics from complete withdrawal. Their Web presence provides a virtual community for those afflicted, and a wealth of information for everyone. I hope many readers (but especially the well-intentioned folks who plan the Post’s birthday parties) will visit and learn from www.hyperacusis.net.

On the Post’s Nov. 11 Letters page, Brenda Roberts, Ottawa Pubic Library librarian, accused me of “intellectual dishonesty.” In last week’s column, I said the Toronto Public Library (TPL) carried 16 “Regnery Publishing” titles. In Ms. Roberts’ search, she “stopped counting at 50.”

But Ms. Roberts electronically searched “Regnery,” not “Regnery Publishing.” By reading as well as counting the titles, she’d find that the distinction is important. Virtually all Regnery Publishing titles comprise conservative advocacy. But of the TPL’s 600-odd “Regnery” titles, most appeared between 1950-70 and display kaleidoscopic eclecticism (An Investor’s Guide to Swiss Annuities, Diary of an East Prussian Surgeon, Slow Cooker Cook Book, etc.). Reviewing the first 300 entries for “Regnery,” I found fewer than 10 titles of intentional conservative ideology published after 1990. Res ipsa loquitur.

Barbara Kay
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