When I was 15, I was retaking a math test after school and my world suddenly started spinning. I felt like I was going to pass out. I was scared and couldn’t focus, so I had to leave the room. The sensation felt as if I were spinning outside of my own body. It continued throughout the night, and I ended up in the emergency room.
Doctors initially told me I was dehydrated and sent me home. But my symptoms worsened—I was dizzy, had severe headaches, and missed a whole week of school. I was then referred to Boston Children’s Hospital, where I saw several specialists, including cardiology and neurology. I underwent MRIs, blood work, and many other tests.
Eventually, an MRI showed I had Enlarged Vestibular Aqueduct Syndrome (EVAS). My doctor warned me there would be a long road ahead. I was quickly referred to the Balance and Vestibular Clinic at Boston Children’s, where I remain a patient to this day. It’s one of the few pediatric hospitals that specializes in vestibular disorders.
That first appointment was overwhelming. I was rushed into a hearing test and learned I had bilateral sensorineural hearing loss. Then came a series of vestibular tests: I was spun in machines that made me dizzy, flipped upside down, asked to balance on one foot, and had warm and cold water sprayed into my ears. More imaging and genetic tests followed.
The diagnosis was difficult to accept—there was no treatment, and any head injury could cause further hearing loss. As a multi-sport athlete and high school freshman, my world felt like it had been turned upside down.
From then on, I was determined to face this condition head-on and live my life as normally as possible. It wasn’t easy, but I tried to keep a positive attitude—my family often said I did it all with a smile.
I’ve done vestibular rehab four times and made tough decisions, like quitting ice hockey because it was too risky, while holding on to my passion for field hockey. I was determined to keep playing.
Over the years, I’ve been on many medications to manage dizziness, anxiety about dizziness, and chronic migraines. I tried everything—from acupuncture to cognitive behavioral therapy and biofeedback at Boston Children’s. My hearing worsened, and I now use a hearing aid in my right ear.
In addition to EVAS, I was diagnosed with vestibular migraine, BPPV (Benign Paroxysmal Positional Vertigo), and PPPD (Persistent Postural-Perceptual Dizziness). I manage these conditions through maneuvers, medications, and lifestyle changes. I’ve had to give up certain things, like roller coasters, flying often, and going to concerts. Loud and crowded places are especially challenging, so I avoid them whenever possible.
Driving took a long time for me to feel comfortable with because small head movements and busy environments can trigger dizziness. Now, I understand my triggers, like noisy stores and crowded spaces, and I adjust my life accordingly. I work out every day, which helps both my physical and mental health.
I’m proud of how far I’ve come. I played collegiate field hockey, was named a league all-star, and led my team in goals and points for two seasons. My doctors still don’t fully understand how I achieved this with so little vestibular function. It was tough, but it showed how strong I am.
In high school, I rarely talked about my condition, which I now regret. Vestibular disorders are invisible, and as a teenager, it was hard because no one could see what I was experiencing. I kept it to myself and tried to push through.
But in college, I realized how much this condition affects every part of my life, physically, emotionally, and socially. To thrive, I had to open up. Sharing my story helped others understand me, and it helped me accept and advocate for myself.
After everything I’ve been through, and continue to manage, I know one thing for sure: I’m a fighter. I’m a perseverer. And I’m stronger than I ever thought possible.
To anyone just starting their recovery journey, my advice is simple: advocate for yourself—only you truly know what you’re going through. It’s okay to ask for help, and it’s okay to let others see when you’re struggling. You don’t have to face this alone. True strength comes from getting back up, again and again.