Making way for new dreams.
Kyra Hairston, a New York native, can still remember when she fell in love with Korean culture. As a young girl, her best friend Abril invited her to a Chuseok Festival, a Korean harvest celebration. At the festival, Kyra tried Korean food, heard the language, and listened to K-pop for the first time. Within a matter of hours, she was enchanted. That summer, Kyra visited South Korea with Abril and returned several years in a row. Over time, it became a second home.
During Kyra’s senior year of high school, she was accepted to several colleges in the United States, but none of them sat well with her. She had always seen herself going to school and living in Korea. So, she declined all of those colleges and applied to one university in South Korea: Yonsei University. The day after Christmas in 2017, Kyra found out she was accepted. What she didn’t know was that in a year, her life would change completely.
Kyra had never had a migraine attack before, but one night out of the blue, returning to campus from a K-pop event, Kyra experienced a migraine with visual aura. She saw intense shooting lights going in every direction. Kyra felt like she was in the middle of an intense laser light show, which is a typical part of any K-pop concert. But this light show left Kyra confused, overwhelmed, and scared.
This “light show” continued for hours. In a panic, Kyra called her friends to her dorm room. They stayed up with her all night until the sun came up. That morning, she went to see an ophthalmologist, which was quite challenging because although Kyra spoke Korean, she did not know advanced medical terminology. The doctor checked for a torn retina, but that was not the issue. She walked away with little direction on what to do next.
With no solid reason as to why she was experiencing these vision changes, Kyra returned to campus. It was unsettling not knowing what was happening or why. The lights continued to flash and intensified as the days wore on. New symptoms started appearing. Any light at all caused Kyra severe pain in her head and kept her from attending classes. Her eyes would burn and hurt, and she would constantly experience “afterimage,” where whatever she looked at remained in her vision after looking away.
“I would look at the screen, and for some reason it would seem as though the words were disappearing off the screen—like it was magic ink,” she says.
Putting a name to her condition
The constant visual disturbances forced Kyra to quickly discontinue her studies in South Korea. She returned home to Washington Heights in New York City and moved in with her mom, Marvis Martin, a soprano with the Metropolitan Opera, and their Yorkiepoo, Buster.
Kyra spent a year going to ophthalmologists and neuro-ophthalmologists who were all baffled by her condition. She finally received an official diagnosis from Matthew Robbins, MD, at Weill Cornell Medicine: visual snow syndrome (VSS).
Visual snow syndrome is a rare neurological condition that causes extreme visual disturbances such as static, light sensitivity, afterimages, trailers, and floaters. The “light show” is constant and unrelenting. To see through Kyra’s eyes is like looking at an old television screen tuned to a channel filled with static. There is no “off” switch.
The root cause of VSS is hyperactivity of the visual cortex of the brain. There is no neurological or ophthalmological test that detects VSS. VSS is considered a rare disease; the number of cases is unknown, but it typically begins in the teens or early 20s, and is more common in men. The number of cases is unknown, but it typically begins in the teens or early 20s, and is more common in men. Currently, there is no specific treatment or cure.
VSS is a painful condition, accompanied by migraine attacks, photophobia, numbness and tingling in the extremities, ringing in the ears, muscular pain, and anxiety. In a typical month, Kyra experiences between 10 and 12 migraine attacks, lasting from one to three hours.
For Kyra, the worst symptom is intense floaters, where she sees large clumps of vitreous jelly and white blood cells in her eyes. Kyra explains: “They are so big I can barely see the blue sky anymore. I can’t remember what that looks like.”
An occasional yet scary symptom is feeling disconnected or detached from oneself—a condition called depersonalization. For Kyra, this comes as feeling out of place in her home, disconnected from reality, and not feeling any comfort or emotion from her mother’s touch. Kyra and her mother are extremely close, so feelings of disconnect is scary, heartbreaking, and emotional for both.
Kyra’s static can be blinding or translucent. It’s most intense at night. Her eyes don’t seem to know what to do in the dark, so they create patterns and illusions that are very similar to what you see when looking into a kaleidoscope. These can become intense and frightening for Kyra. At times, she’ll be able to sleep through her “kaleidoscope,” but for the most part it’s not so easy. In the dark, rays and shapes of green or blue morph before her. When she closes her eyes, Kyra sees fireworks or orbs of light, making sleep almost impossible.
Visual snow syndrome not only affects a person’s vision, but hearing and cognitive function can also be impaired. Seven months ago, Kyra started experiencing auditory hallucinations while trying to sleep. It would sound as though someone was saying something very fast and loud in her ear. Thinking her room was haunted, Kyra was petrified and didn’t sleep for three nights. Eventually she realized it was related to her mis-wired brain.
A dream abandoned, a perspective gained
A year ago, Kyra would have told you that visual snow ruined her life. It took her away from her utopia, South Korea, and the school she had wanted to attend since she was 13.
“I was crushed,” she says. “It felt like my dream was ripped from my hands.”
She no longer gets to see her friends as often as she’d like. It has disabled her from being able to work and support herself. Worst of all, it has taken away a lot of her happiness. Depression and anxiety are often comorbid with VSS as the sudden change in visual perception, intense pain, and feelings of depersonalization can be overwhelming.
Luckily, through a lot of hard work and a strong support system, Kyra now feels like she is accepting her pain and beginning to rebuild her life. Talk therapy has helped her understand that there is no changing what she has, but she shouldn’t allow it to destroy her life.
While she waits for further research into visual snow—and remains hopeful—Kyra is trying to spend more time outside, doing the best that she can to make her eyes accept what’s going on. Getting her life back is her number one goal.
“I definitely took life for granted prior to having migraine or visual snow,” says Kyra.
Simple things like walks in the park, going to see a movie with friends, or attending a concert can still be done, but in extreme discomfort. She hopes that there will be a cure in the future and dreams of a day when a quiet walk in the park on a clear day is as vivid and beautiful as she remembers.
“I know it’s not going to kill me. I know I won’t go blind,” she says. “It’s just something I have to live with, and it’s going to make me stronger.”
Kyra is also learning that just because one of her dreams didn’t work out the way she had hoped, it doesn’t mean her life is over. Now she’s focused on a new dream: becoming an artist manager. She’s especially interested in working with American artists who struggle with mental illness and want to speak out about it.
To those newly diagnosed with a headache disease, Kyra encourages you to keep your head up. “Some days you’ll feel great, and some days you’ll feel miserable,” she says. “But it’s all part of your journey. This won’t last forever. You’ll be OK. Visual snow has given me strength and resilience. I’m a lot stronger than I knew I was.”
— by Jaime Sanders
Visual Snow Initiative: visualsnowinitiative.org