Robin Huebner reports: A world with music no one else can hear
Fargo, ND - Don Johnson hears hymns - morning, noon and night.
Most of them he's known since childhood from spending Sundays in church, while a few are songs he's never heard before.
But the 84-year-old Fargo man is the only one who hears them. Singing voices and words even go along with the music.
"I hear it very clearly," said Johnson, the retired founder of Don's Car Washes.
Since Don has no musical background except for his time in church, the phantom music was a mystery to him and his wife, Dorothy, for some time.
At first, they didn't talk much about it, fearful of what others might think. They decided to ask his doctors, who didn't seem to know. A few were even skeptical about his symptoms.
Don said while the music was mostly pleasant, not knowing where it was coming from wasn't.
Then late last summer, a family member found information about musical ear syndrome, a term coined ten years ago by Neil Bauman, director of the Center for Hearing Loss Help in Stewartstown, Pa.
The symptoms matched Don's to a tee, and the couple learned the condition is actually common.
"It was earthshaking news to hear that there were other people going through this," Dorothy said.
Music from nowhere
It started when Don walked into a bedroom in the couple's south Fargo condominium on several occasions and thought he could hear music.
He asked Dorothy if she could hear it.
With concrete floors and ceilings in their building, they say they never hear any outside noises, but one day in December 2011, Don walked into the same bedroom and could definitely hear music.
He stepped into the kitchen and heard it there, then walked into the living room.
"All of a sudden, I'm hearing these beautiful hymns," Don said.
He wasn't exactly sure what to do.
"I didn't even tell Dorothy for two days," he said.
Don was afraid of what she would think, but he couldn't hide the fact that he enjoyed the hymns and accompanying voices.
"I was like a kid with a new toy," he said, adding, "I wanted to hear them all the time."
At first, only a handful of hymns came into his head. Then Don retrieved his mother's old Lutheran hymnal and started paging through it.
No matter which hymn he turned to, "On the first word, they were singing it with me," he said.
Don wants to make this very clear: When he says "they," he's referring to the singing voices only.
"These are not real people," he said, with emphasis. "If you believe they're real people, then you've got a problem."
Each day, Don hears the music at breakfast - from a distance at first, then moving in quickly.
Throughout the day, he's aware of the hymns but doesn't acknowledge them. He embraces the phenomenon fully around 4 p.m. by holding what he calls a 'sing-along" for about a half hour.
He'll sing along, in his head only, with what he describes as mostly male voices.
It's not all fun and games.
"Sometimes they can be like a nagging kid," Don said, "like 'Daddy, come play with us.' "
And sometimes he'll hear one lone voice singing loudly in a monotone fashion, which he finds bothersome, even disturbing.
Those instances, though, are few and far between. Mostly the sounds are pleasing and soothing.
It has Dorothy sometimes feeling like she's on the outside looking in.
"I wish just for five minutes I could (hear the sounds), but I wouldn't want it in my head," she said.
More about the brain
Don has learned that the sounds in his head have much more to do with his brain than his ears. His hearing has been bad for many years, due in part to chronic exposure to loud noises.
He was an avid hunter as a kid, endured battle noises while serving in Korea, and had years of workplace exposure after starting the car wash business he owned for nearly 30 years.
"That was before ear protection was thought of," Dorothy said.
But the main culprit for Don is Meniere's disease, an inner ear disorder that causes sudden bouts of vertigo, tinnitus, or ringing in the ears, and hearing loss.
While the vertigo of Meniere's has been under control with medication, the disorder made Don incredibly sensitive to noise - not just loud sounds, but any sounds.
"We would go to a party and he'd stay two minutes, turn around and go home," Dorothy said.
So the Johnsons live a quiet existence. They play no radios or music, and they watch TV with the volume muted and the closed captioning on.
It's that lack of auditory stimulation that has Don's brain hard at work.
"It's your brain trying to fill the space of no sound," said Rose Brakke, a doctor of audiology at Catalyst Medical Center in Fargo.
She hasn't worked with Don, but has seen many patients like him.
Brakke said people with hearing loss who hear phantom music have what she calls "musical tinnitus."
Some of them are helped by a hearing aid, which Don already wears.
"When we put a hearing aid on them, they're hearing actual sound, so their brain isn't looking for it," Brakke said.
Others are helped by a device in the ear that plays fractal tones - random, non-musical tones that Brakke said help retrain the brain to not "hear" the tinnitus sounds.
Brakke said her treatment regimen also includes counseling and relaxation techniques for the patient, because stress, anxiety and depression often go along with tinnitus.
She said tinnitus sufferers often isolate themselves out of frustration. Don has done the same because he can't handle everyday noise.
"I've withdrawn from society, practically," he said.
Dorothy says Don is content staying home.
He's battling other illnesses as well, including a rare blood cancer that is in remission, so the hymns in his head are the least of his worries right now.
In fact, he doesn't want his musical ear syndrome to be cured. He just wanted to know what was causing it.
"Just the knowledge that there are other people (with it) has been really good," he said.