OPINION:
After Jonas Salk’s invention of the polio vaccine, the chairman of the PolioPlus committee said, “Ending polio will be a triumph for humanity, a win for the children of future generations.” He was right, as the vaccine saved more than 1.5 million lives. Unfortunately for me, Salk did not pull the trigger on polio’s cousin, acute flaccid myelitis.
I am one of 751 people who have contracted acute flaccid myelitis, or AFM, a rare but serious polio-like disease causing muscle weakness and in some cases permanent paralysis. But I refused to let my diagnosis define me and proved that my resolve was stronger than ever by creating an organization to help other children with similar neurological conditions find a sense of belonging.
My AFM journey started a decade ago when I was 7 years old. After playing outside, I collapsed on the floor of my house and lost the capacity to move. I was rushed to Stanford Children’s Hospital, and after, the doctors struggled to figure out what I had. One week later, they decided to use a new label for my condition: “acute flaccid myelitis,” a virus that the Centers for Disease Control and Prevention had started tracking only a few months before.
The paralysis I was experiencing had the potential to be permanent, even deadly. Instead of dwelling on my weakness, however, I focused on physical therapy and my small wins over time. After two months, I sat up alone for the first time and took my first steps. I didn’t care about the movement I had lost because I felt like a superhero every time I made new gains. Although I was never able to regain function in my right shoulder, I am proud to be one of the few AFM patients to recover most of their motion.
Sports were tricky for me because of my shoulder, especially since my throwing arm was affected. When my mom asked me to “give rowing a try,” I immediately agreed, thinking that I could succeed at a sport that didn’t involve throwing a ball. After learning that “rowing uses 86% of the body’s muscles,” though, I had serious reservations. When I got to practice, I was even more intimidated because I saw teenagers with bulging shoulders lifting concrete weights.
Once we got on the water, though, I realized that my shoulder was an advantage because I could feel the flow of the boat under me and use technique instead of power. My coach even put me at the front of the boat so the other rowers could follow me in almost all of our races. My rowing style helped us win medals in five different races, culminating in a gold medal at the Southwest regional rowing championships.
My success at rowing inspired me to help other children with neurological disabilities find a place where they feel a sense of belonging. To do this, I started Neurostronger, an online nonprofit community for neurologically disabled children. Through a podcast, I started sharing success stories of people who live incredible lives despite their disabilities. My goal was to make sure that every child with a neurological disability can find something that they are good at and to feel “in the zone,” as I do when I am rowing.
The next step was taking my efforts beyond the digital world. To do this, I joined three organizations: Ability Path, a California group offering educational, therapeutic and vocational services to people with disabilities, the Vijaya Mary School for the Blind in India, and Mustard Seed Communities, a group that houses abandoned disabled children from different countries.
After a summer of service with Mustard Seed in Jamaica, my fellow Neurostronger team members — also high school students — persuaded Apple and Google employees to donate $22,000 to these three organizations.
Of the $22,000 we raised, I returned to Jamaica this summer with $10,000 to fund Mustard Seed Communities with a specific project: to build a permanent shelter for displaced and disabled children from Haiti who are now being cared for. Some of these children were abandoned — some of them literally left on the side of the road. Our collective work, however, will hopefully help give them hope and a home to rebuild their lives and treat disabilities such as cerebral palsy.
To memorialize this and capture the stories of neurologically disabled children, Neurostronger created a virtual anthology with more than 100 entries that capture the unique stories of some of those we helped abroad. We hope that by promoting these stories, we can share the authentic disabled experience, sharing the victories and struggles of neurologically disabled individuals across the globe.
Working with these organizations, I had an awakening and realized that without my disability, I would never have traveled the world, documented the stories of neurologically disabled children, and raised money to improve their quality of life.
This April, I gave a speech to 150 of my classmates about my experiences with AFM. I once thought that my disability would prevent me from doing anything meaningful in my life, but I could not have been more wrong. Instead of holding me down, my disability has empowered me to become a storyteller and community builder who has had the privilege of helping more than 3,000 neurologically disabled children.
My story — and theirs — is evidence that when we hold on to hope and continue to believe in ourselves, nothing is impossible.
• Vishnu Kagolanu is a 17-year-old high school senior at Sacred Heart Prep in Atherton, California, and the founder and CEO of Neurostronger.com (www.neurostronger.com), an online platform designed to inspire, create community and raise money for children with disabilities.
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