Most people with her condition develop it after head trauma, but she’s had it since birth.
Imagine never knowing the sound of silence. That’s what 32-year-old Gemma Cairns goes through every day, as she has an extremely rare medical condition that forces her to hear her own blood course through her veins every waking second.
According to The Daily Record, Cairns didn’t realize this was abnormal until she told her mother about it as a teenager. Cairns desperately tried to find answers for the next 14 years.
“I’ve never heard complete silence,” she said. “I’ve always had noises. I’ve always heard my eyes moving and my heartbeat in my head.”
After years of being prescribed medications for nasal issues and blocked ears, she gave up. Only after moving to Glasgow in 2016 did her luck change. After seeing a specialist, she was diagnosed with bilateral superior semicircular canal dehiscence.
Cairns is missing part of the temporal bone in both ear canals, which affects both her hearing and balance. She underwent surgery on one ear last September and is awaiting surgery on the other this October. If successful, it’ll be the first time in her life that she’ll experience complete silence.
The lifelong condition plaguing Cairns’ every movement has been difficult to describe to the people in her life, as it’s extremely rare and could sound utterly fabricated to some.
“I’ve always heard my blood rushing, like a swooshing sound,” said Cairns, but it’s the constant eye movements that have caused her the most trouble.
“When you do say to someone, ‘I can hear my eyeballs moving,’ people ask me what it sounds like and I try to think of so many things that I can describe it with but just can’t tell you a sound that sounds even remotely similar to it.”
“It’s not squeaky, but it’s similar. It’s deep in the back of my head. You get tinnitus with it as well, so there are always noises going on.”
Cairns has done a remarkable job not letting this overwhelming condition dictate how she lives her life. As a working mother, she gets through the day like everyone else — even if dizziness and constant noise permeate it.
“I still go to work and things like that, but it affects things like playing with my son….If there are more than a couple of noises going on at once it can overstimulate me. My ears just can’t take it.”
“Sometimes I just want to sit and be quiet and not hear anything,” said Cairns. “I feel bad saying it because it’s not like I’m dying, but it does take its toll — especially when I can’t hear as well as everybody else. With some frequencies, I just can’t hear at all. I really struggle with deep voices.”
So what does a typical day for Cairns look like? Besides her inability to function normally in loud environments or dizziness affecting her quality time with her family, the condition has robbed her of regular exercise.
“I quite like running but again it’s because when your heart starts to pump faster, it’s like pulsating tinnitus and I hear it and feel it,” she said. “It gets me really dizzy and sometimes I just think it’s not worth it. Especially at work and things if I move my head too quickly to one side it will knock me off balance and vice versa….Even moving my eyes too quickly will knock me off balance.”
Luckily, though, her condition hasn’t affected her sleep.
Cairns’ first surgery corrected the problem her right ear. Braving the risk of losing her hearing in her left ear, she’s ready to double down and get the second operation in October. “You can’t operate on both at the same time,” she said, “because it knocks you completely off balance for a while.”
Cairns has a come a long way from feeling constantly “drunk” and desperately seeking help from doctors who thought she was crazy. Her upcoming surgery should put an end to her lifelong struggle with this condition. She hopes her story will spur others to keep their heads up.
“It’s a rare condition, but I think it’s more undiagnosed that anything else,” she said. “I think people have it but they don’t know they can get help.”
After learning about the Scottish woman who suffers from a condition that lets her hear her own eyeballs move and blood flow through her veins, read about the woman who claims to have had sex with 20 ghosts. Then, hear the woman who gouged her own eyes speak about it for the first time.