Life after tinnitus and hearing loss

Comedian writes book about deaf child after getting a hearing aid at age 30

Samantha Baines was just 30 when she noticed a peculiar whooshing noise in her ear. An actress and standup comedian, Baines first heard the sound at the Edinburgh Fringe Festival in 2016, when she was sitting next to a speaker at a particularly loud concert.

“I heard this weird noise in my ear,” recalls Baines, now 32, who has starred in The Crown and Call the Midwife. “It’s like if you fanned something quickly next to your ear, and you can hear the wind moving. I ignored it at first, but kept hearing it in loud environments, any time I was in a noisy restaurant or a club, or it got too loud on the Tube.”

A hypochondriac, Baines became convinced there was a spider scuttling around inside her ear, after watching a series of gruesome videos on Youtube. At the advice of her doctor, she went to an audiologist, who diagnosed her with hearing loss and tinnitus, a condition that makes people hear unexplained sounds. She was told she would need to wear a hearing aid.

“I thought (hearing aids) were just for people who spoke Latin and ate Werther’s Originals. In the waiting room at the hearing centre, everybody had grey hair, and in the medical leaflets I was given, everybody was in their 70s and 80s. I didn’t know anybody else who had a hearing aid. I felt completely alone and different, and that it had changed my life for the worse.”

But Baines’s predicament was not as rare as she thought. About one in six Britons suffers from some degree of hearing loss, and 28 per cent are diagnosed between the ages of 16 and 60, according to the Royal National Institute for Deaf People. Doctors fear that it is on the rise among under-70s thanks to the proliferation of high-intensity headphone sets, known by audiologists as “personal audio.”

Indeed, look around any packed railway carriage and most of the young people will be armed with a heavy set of over-ear headphones, some of which pump out music at 110 decibels, which is equivalent to the sound of a car horn blaring into each of your ears.

“Personal audio is going to have huge impacts, definitely,” says Adam Chell, the audiologist who diagnosed Baines’ condition. “There’s a general 60-60 rule: you listen to your personal audio for no more than 60 minutes a day, at no more than 60 per cent of the maximum volume.

“Every generation has its issues with noise. If you look at the industrial generation, they were working in coal mines and paper mills, and you see lots of ‘gunner’s ear.’ Then you’ve got the baby boomers who were partying at rock concerts and everything. And now you’ve got this generation, for whom it will probably be personal audio, and having a device in their hands at all times. But we won’t see the effects for a little while.”

Baines is convinced that her condition stems from a Limp Bizkit concert in her teens, when she was sitting directly next to the speaker — “those were the cheap seats,” she explains.

After her diagnosis, she wished she had gone for a hearing test sooner; on average, it takes between seven and 12 years for somebody to go for a test after first noticing a problem. “There were things I blamed on people mumbling, or the television being too quiet, or someone having an accent in a loud environment. Now, I look back and I can see some of the signs, but at the time I had no idea.”

She also worried that her career was in jeopardy. “I thought I was going to have to stop period dramas and standup comedy. I thought, ‘I can’t wear my hearing aid in a period drama, because they haven’t been invented.’”

Baines was fitted with two hearing aids — an in-ear aid, which is small and usually cannot be seen, and an over-ear aid, which is larger and connects to an app on her smartphone, allowing her to stream podcasts. Despite her worries, she found her employers to be surprisingly accommodating.

She is currently starring in Channing Tatum’s Magic Mike Live on the West End, and wears her overear aid on stage, which can only be seen by the audience if she lifts her hair. “They were very careful throughout the process to get me earplugs for my other ear, (to balance) the noise levels. I think if we just open up and tell people, they will put things in place, but it can be really scary because you feel like you might lose your job.”

Her hearing aid also gives her the ability to hear the whispers of hecklers at her standup comedy gigs — although that “isn’t always a good thing,” she adds.

Along with hearing loss, Baines’s diagnosis of tinnitus also came as a surprise. She hadn’t known much about the condition, and vaguely thought that it gave you a “ringing ” sensation in your ears — hers was more a “whooshing” sound, so it couldn’t possibly be tinnitus, she thought.

Tinnitus can make you hear a whole range of unexplained noises, according to Chell, including buzzing, hissing and throbbing. For some patients with dementia, tinnitus can even come in the form of music seeming to play on repeat. It affects as many as one in 10 people, but only 10 per cent of those afflicted will find it “life-affecting.” In some extreme cases it has even been known to drive patients to the brink of suicide.

Baines’ whooshing noise was triggered by loud noise; her hearing aid, which limits the volume of sound entering her ear, has mostly made it go away.

Despite her initial dismay, Baines’ condition is not nearly as life-restricting as she expected, and she hopes to paint an optimistic picture in her new children’s book, Harriet Versus the Galaxy, which tells the story of a 10-yearold deaf girl who realizes that her hearing aid can translate alien languages.

“Harriet has a bright green hearing aid,” Baines explains. “I’ve spoken to so many young adults who’d love a sparkly pink hearing aid, for example, because we’re proud to have a hearing aid and it’s nothing to be ashamed of. In Magic Mike, after the show, people sometimes say, ‘Oh, you’d never know.’ Which I find a really weird comment, because it suggests I’m trying to hide it.”

She hopes the book will particularly appeal to the U.K.’S 50,000 deaf children, about half of whom are born deaf owing to a genetic condition. The others may have been made deaf by complications in pregnancy, including rubella and herpes infections, or by repeated ear infections in childhood, which can trigger a rare disease known as cholesteatoma, which causes skin to grow inward from the eardrum.

In extremely rare cases, children can lose some of their hearing after exposure to very loud noise. About 60 per cent of childhood hearing loss is preventable, according to the World Health Organization.

To the children affected, Baines says: “You’re not alone. There are people like you out there, and they’re still getting on with their lives and doing cool stuff. Having a hearing aid or having tinnitus can be really trying, but it doesn’t have to stop you achieving what you want to achieve.”

I thought (hearing aids) were just for people who spoke Latin and ate Werther’s Originals. I didn’t know anybody else who had a hearing aid.

SAMANTHA BAINES