When noises drive you mad
UES author’s tragic battle with hypersensitivity to ‘hidden’ noises
U PPER East Side scholar Dr. Michelle Lamarche Marrese seemingly had it all. She was beautiful and brilliant, a Russian historian with several advanced degrees and the author of an acclaimed academic book on women’s property rights.
But when Marrese, 52, was found dead in bed in her multimillion-dollar Upper East Side condo on Oct. 30, her friends weren’t wholly surprised. They figured she was depressed and committed suicide over her unraveling marriage.
“Thirty years of lies. I cannot live this way,” she had written ominously on Facebook days earlier.
But I know what really killed Marrese, and it wasn’t her failing relationship. It was her hidden battle with misophonia — or “selective sound sensitivity syndrome.”
I know this because she e-mailed me last February, desperately seeking advice after I wrote a story on the mysterious condition for The New York Times, and we corresponded extensively.
“Unfortunately, the battles about noise (which “no one else can hear”) are destroying my marriage and my health,” she confided.
In the building, “noise travels across several floors through the vents. We suffered through 18 months of shrill noise coming from the toilet next door.”
A neighbor “held me hostage” with construction noise from interior renovations. “That was when I bought the industrial headphones and when the misery began.”
Her many complaints went unresolved. She said she was dismayed at the constant brushoffs by her husband and her “cretin of a condo manager.”
People with this hidden disorder are gripped with instantaneous panic and anger when faced with certain sensory triggers, often the sounds of chewing or eating. They struggle to contain their reactions while seething inside with blood-boiling rage. B UT what causes it, exactly?
Currently, with so little science on misophonia, there is only speculation. It may not even be an auditory disorder, and is probably neurological.
Some sufferers are triggered by movements like fidgeting or foot-tapping. The rage reaction has nothing to do with the volume of the noise; offending noises might be as loud as a firecracker or faint as a whisper
Most recently, a gene variant associated with misophonia has been identified.
People who suffer from the disorder face an immediate, involuntary response of sweating and palpitations when a noise bothers them.
People have even reacted when anesthetized for surgery.
“Misophonia severely undermines people’s lives,” said Marsha Johnson, an audiologist in Portland, Ore., who saw her first such patient 18 years ago. “Sound permeates every aspect of life. Having misophonia is like being allergic to light or air.” M ARRESE struggled with excruciating noise triggers within her building, a glassy condo tower where “the price would make you vomit,” she wrote.
She and her husband, Michael Marrese,. bought the three-bedroom sponsor unit for almost $3 million in 2006.
To a misophonia sufferer, ordinary sounds — even those that others barely notice — feel like nails on a chalkboard, provoking a nuclear-level visceral response.
“My husband is a noisy eater,” Marrese wrote to me. “He breathes like he just ran a marathon even while sitting still. Of course, noise does not bother him, so he manages to forget that I really am in emotional pain most of the time.”
Sufferers of the cruel condition sometimes leave jobs, live alone and alienate friends.
“You can’t logically think your way out of it,” said filmmaker Jeffrey Scott Gould, who made a recent documentary about misophonia, “Quiet Please . . .”
“I get what it’s like for the doubters, the nonbelievers,” he said. “I see the lunacy in misophonia. It sounds ridiculous.”
People spend years believing they are grouchy and irritable, Gould said, until they learn, with great relief, that misophonia is real.
Acute onset in late childhood is typical; it may run in families. “My father built two of our houses and insulated the hell out of them,” Marrese wrote.
For now, the only relief is coping strategies. One approach is soundproofing, via avoidance and ear protection. Another is drowning out the offending noises with louder noise.
Scarily, triggers often increase over time, although so do coping skills. Still, “these individuals have fragile lifelines,” often with few options and few resources, said Johnson.
Respite from their triggers is essential to their well-being, she said. Their lives revolve around managing their disease.
“They look healthy,” Johnson said. “People categorize them as weirdos or drama queens. Nobody wants to change back to normal more than somebody with misophonia.”
LAST winter, on a Facebook group for misophonia, Marrese wrote, “I am ready to slit my throat. It’s New Year’s Eve, of course I had another screaming fight with my husband . . . I simply can’t take much more.”
Two weeks later, she mentioned, ominously, “Checking out.” She contacted me the following month. The relentless noise triggers caused anxiety attacks, heart palpitations and migraine headaches, she wrote. Her life’s work was imperiled.
“If my trip to Russia is ruined, the book I have been working on for 13 years will take even longer,” she wrote. “I am wondering at this point if I am at risk of having a stroke or a heart attack. The noise is literally unbearable. And if anyone else hears it: they will say it is a ‘nothing.’
“It is not nothing for me, and wearing headphones simply adds to my irritation and my inability to concentrate. My ears itch constantly when I have them on.
“I am trapped here. I have far too much material when I’m working to go to the library, and you know the endless sniffling, coughing, gum chewing that goes on there.
“I see no way out, especially as I am financially dependent (a long story), I don’t have a family, and there is, quite simply, nowhere to go. We bought this place to be my office, not just our home.”
Marrese was especially annoyed when people urged, “Just move,” or spouted platitudes like, “At least you don’t have cancer.”
“There are few people who take misophonia seriously,” she wrote. “I find it sad that compassion and empathy are in such short supply.”
She ended her last message to me: “Forgive the intrusion and the outpouring. I have left your name for my husband. If I can’t stand any more agony, at least you can write about me.”
Having misophonia is like being allergic to light or air. — Audiologist Marsha Johnson I get what it’s like for the doubters, the nonbelievers. I see the lunacy in misophonia. It sounds ridiculous. — Filmmaker Jeffrey Scott Gould