Once upon a time, there was a girl who was different. She had a superpower that no one could see, and at first, concealing it was easy. But as the girl grew up, her powers got harder to contain. What started out as a quirk turned into something much more sinister, and after years of suffering, the girl realized that she wasn’t blessed with powers — she was cursed.
This sounds like a fairy-tale, but it’s the real life experience of 32-year-old Gemma Cairns. From the moment she was born, every song she heard, every lesson in school, and every “I love you” from her parents was accompanied by unending and indescribable inner-ear noises. What she was hearing wasn’t normal, but it wasn’t until she became an adult that she realized something was very, very wrong…
At first, Gemma Cairns thought that everyone could hear the way she could. After all, she never knew what it was like to not hear a constant whooshing noise, or static, or an incessant squeak from the back of her head.
Our childhoods were noisy, but at the end of the day, we were all able to retreat to the silence of our beds. Gemma didn’t have this luxury. Even buried under the covers, she was inundated with noise…
“There are always noises going on,” Gemma said. “I’ve never heard complete silence.” As a teenager, she finally realized that something was wrong: She was alone in her inability to experience silence, and she knew it was time to seek help.
This realization was the start of a fourteen-year journey for answers. For Gemma, there was only one way to describe what she thought everyone understood: “I’ve always heard my eyes moving and my heartbeat in my head.”
As you may expect, this was a strange complaint for doctors to hear. Where do you go from “I can hear my eyeballs move?” For years, Gemma was prescribed medication for nasal issues and blocked ears, but nothing worked.
Super-sonic hearing, Gemma decided, was just something she was born to endure. Besides, now that she was an adult, she had more important things to focus on: her son. But even caring for him became difficult.
“I still go to work…but it affects things like playing with my son…if there are more than a couple noises going on at once it can overstimulate me,” Gemma described. She lived her life in fear of loud noises…
At least, until the day came that she couldn’t live with the noise. In 2016, Gemma saw a specialist in hopes of taking control of her hearing. But when she sat with the doctor and told her story yet again, she felt doubtful.
She tried to describe a sound that doesn’t exist: “People ask me what it sounds like…[I] just can’t tell you a sound that sounds even remotely similar to it,” Gemma said. But after examining her, the specialist told Gemma what she’d been waiting to hear.
Johns Hopkins Medicine
The specialist gave her a diagnosis: Bilateral Superior Semicircular Canal Dehiscence. This would be intimidating for most people to hear, but for Gemma, it was music to her ears. A diagnosis wasn’t just an answer — it was hope for a cure.
New Treatment for Superior Semicircular Canal Dehiscence
The reason Gemma could hear her own blood flowing through her veins was because she was missing part of the temporal bone in both ear canals. This on its own sounds unusual, but Gemma soon learned that she was a walking medical marvel.
See, not only does the condition affect just 1-2% of the population, but it only starts happening to people in their 40s. Gemma was in her 30s when she visited the specialist, but she’d been experiencing the condition since birth.
Rankin & Bass
What makes the condition so difficult to diagnose and treat is how specific the symptoms are to the individual. Some people go through years of psychiatric therapy before realizing the problem isn’t in their brain, and seriously disturbing symptoms are left untreated…
Some people find that their eye movements are in sync with their pulse, meaning they’re always sensing motion. Others constantly hear the vibrations of their own voice, and if you’re like Gemma, this can make hearing anything at all a challenge.
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“With some frequencies, I just can’t hear at all. I really struggle with deep voices,” she explained. To anyone without the condition, hearing these descriptions of it is terrifying. But Gemma was always aware of how much worse her situation could be.
“Sometimes I just want to sit…and not hear anything,” she admitted. “I feel bad saying it because it’s not like I’m dying, but it does take its toll.” Imagine feeling constantly dizzy and off-balance — that was Gemma’s everyday life.
But maybe not for much longer. Gemma’s specialist gave her hope for the first time by suggesting a procedure that would correct the problem in each ear…but the surgery didn’t come without its risks.
For one, the surgery could only be done in one ear at a time, meaning Gemma would be bed ridden with excruciating dizziness and tinnitus during the recovery period. With only one ear corrected, it would mean going through the painful surgery process twice.
Kansas City Home Medical Supply
But as she heard the whooshing in her ears, it was an easy decision to make. Last September, Gemma underwent surgery in one of her ears, and months later, she was shocked to hear something she had never before experienced…
All That’s Interesting
Silence. Though it was only in one of her ears, for the first time in her life, she didn’t hear the movement of her blood or of her eyes. And in October of 2019, she hopes to achieve complete silence…
From feeling perpetually “drunk” to being almost fully recovered, Gemma hopes that other people with the rare disorder have the courage to seek answers. After dealing with the condition for years, Gemma has arrived at a sound hypothesis.
All That’s Interesting
“It’s a rare condition, but I think it’s more undiagnosed than anything else,” she explained. “People have it but they don’t know they can get help.” When it comes to this noisy condition, the last thing Gemma wants is for others to live in silence.
Struggling to get a diagnosis was something Susannah Cahalan knew all too well. She was a happy, healthy young woman – six months into her first serious relationship and with a job at the New York Post. Her future was anything but dim.
Unfortunately, all of Susannah’s promising days ahead were put at risk when she suddenly began to experience a random series of strange sensations throughout her body…
When she suspected bedbugs might be the cause, she called an exterminator. However, the possibility of creepy crawly creatures causing her health woes was quickly ruled out when the exterminator found no evidence of them.
Over time, Susannah started to experience more paranoia, hallucinations and seizures so severe that it eventually got to the point where she was unable to work. She was lethargic and in serious distress…
Susannah had no choice but to be admitted to the New York University hospital. Even then, it wasn’t long before she began acting out, eventually becoming violent with the staff.
Susannah would later compare this period of her life to something out of a “zombie movie.” She wasn’t acting like herself, and was frequently aggressive toward everyone – even her friends and family felt threatened.
Judging from her highly uncharacteristic behavior, Susannah’s doctors believed that she was on the verge of a mental breakdown. They eventually suggested that she be transferred to a psychiatric facility, but before she could leave, one man made an unusual suggestion.
Dr. Souhel Najjar decided to take a deeper look at Susannah’s condition. As much as this seemed to be a mental issue, he wasn’t convinced that the cause was as straightforward as a nervous breakdown.
That was when Dr. Najjar asked Susannah to perform a simple task, one that would test and change everything…
All Susannah had to do was draw a clock. As strange as it was, from the moment she put pen to paper, Dr. Najjar’s suspicions were confirmed.
Susannah’s troubling turn towards “insanity” was not borne only out of her own mind, but also her body. It turns out she had a rare disease that was now affecting her mental faculties in some very serious ways…
The clock that Susannah drew in front of the doctor showed all of the numbers on the right-hand side, while the rest of it remained blank. Apparently, this was a clear indicator of brain damage!
Soon after the drawing, Dr. Najjar diagnosed Susannah with Anti-NMDA Receptor Encephalitis, a rare condition that causes the immune system’s antibodies to attack the brain.
If this condition had been left untreated for much longer, Susannah could have faced a devastating illness or even death. Dr. Najjar ultimately saved her life!
Thankfully, Susannah received the life-saving treatment that she so desperately needed as soon as possible. In a stroke of miraculous luck, she was completely cured after spending just one month in the hospital.
Once fully recovered, Susannah wrote a book detailing her experience with the hopes of it helping others with similar symptoms.
Published in 2012, Brain On Fire was even adapted to film in 2016, starring Chloë Grace Moretz as Susannah.
Today, Susannah continues to share her story by speaking publicly about her experience with this illness. Her openness might save the lives of others suffering with untreated brain trauma.
Susannah is well aware of how fortunate she is to have been able to resume a relatively normal life. She’s not one of the 15% who recover but suffer severe cognitive deficits, or even the 20% who suffer mild ones.
The experience has, of course, changed her, though she’s not exactly sure how. “When I look at photographs of me ‘post-‘ versus pictures of me ‘pre-‘ there is something altered, something lost – or gained, I can’t tell – when I look into my eyes.”
Susannah isn’t the only one whose symptoms were far graver than anyone anticipated. On Mother’s Day in 2014, Darla Rodgers and her husband, Tim, were having a mellow celebration in their home. While they were watching a movie, Darla was struck with severe pains in her abdomen.
As the pain worsened, Tim didn’t want to take any chances with Darla’s health, so he drove her to a nearby hospital. He wanted a doctor to examine her just in case the pain was something serious, like appendicitis.
Once at the hospital, doctors took a sample of blood from Darla and, after examining it, determined a short-notice CAT scan was warranted. This wasn’t at all what Darla and Tim were expecting. They prayed nothing serious would come of it.
After the CAT scan was complete, Darla and Tim waited anxiously in the hospital room for the results. After what seemed like hours, the doctor came back, and he had a grim look on his face…
He stared at the couple intently before pulling out the results of the CAT scan. He then spoke three words that made both Darla and Tim go numb with fear: “You have cancer.” Darla’s world instantly collapsed.
More specifically, the doctor told Darla Darla she had stage-four colon cancer, and within six months, she would die. She checked herself into the Huntsman Cancer Hospital in Salt Lake City, Utah, to begin an intense chemotherapy regimen in hopes she could beat the odds.
Like nearly all patients who underwent chemo, she began to get sick from the constant radiation flooding her body. Finally, one doctor stepped in with a totally different plan…
His name was Dr. Glynn Gilcrease, and he was an Associate Professor of Oncology. He feared the approach Darla was taking would have detrimental effects on her liver, so he put her on a lower chemotherapy dose. However, he also wanted to get a second opinion on the matter.
Dr. Gilcrease consulted with a close colleague and section chief for Interventional Radiology, Ryan O’Hara. After an in-depth discussion about the safest option for Darla, both men agreed on a potential solution…
It was called radioembolization. The intricate process would launch millions of microscopic radioactive beads directly into Darla’s bloodstream, where they’d lodge themselves into her body and slowly destroy the tumor. It was a complicated procedure that didn’t always work.
The doctors also had access to SIR-spheres, minuscule spheres infused with a special radioactive isotope used for battling cancer. The level of radioactivity in SIR-spheres was much safer than most other cancer-fighting medications. With all these tools at hand, Darla’s operation began…
Dr. O’Hara and six of his colleagues spent hours operating on Darla. For eight days after the operation, she went through intense, and often painful, specialized treatments. However, on the ninth day, miraculously, she felt better than she had in months.
She didn’t want to get her hopes up, however. Cancer, as she knew, is ruthless, and it can creep up again at any moment. A few weeks after her invasive operation, doctors ran some tests and came back to her with news…
The tumors on her lungs and liver had disappeared! Her body took to the SIR-spheres, and for the first time in what felt like forever, she didn’t need chemotherapy. She also became very close with a woman who went through a similar experience.
Her name was Suzanne Lindley, and she was a 19-year cancer survivor. She was also the founder of a Texas-based cancer support group called Yes! Beat Liver Tumors. Suzanne, having lived through cancer herself, took Darla under her wing.
Not only did Suzanne shower Darla with emotional support, but she made Darla the poster child for her support group. Darla embraced the opportunity and involved herself in as many fundraisers and opportunities to help others as possible.
A lot of amazing opportunities came along because of Darla’s involvement with Suzanne’s group. She was invited to the Academy Awards one year, and she went to the People’s Choice Awards. But neither of those compared to one incredible event she took part in…
Darla walked down the runway for a special fashion show that featured cancer survivors! It was an incredible opportunity to spread a positive message for those who were braving a battle of their own. Of course, Darla couldn’t have done any of this without one particular person…
Her husband Tim showed a level of support and understanding matched by no one else in her life. He was by her side the entire time and always made sure to keep her mood up. Finally cancer free, Darla made it her mission to live every day to the fullest!