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NYT Opinion Page: I Lost My Voice, but Help Others Find Theirs

By June 7, 2017February 5th, 2024Awareness, NF2-SWN, Story of NF

By Alex Hubbard

NASHVILLE — I can tell you the exact moment I realized my voice was broken.

I was sitting in a cubicle inside Pulitzer Hall, the home of the Columbia University Graduate School of Journalism. I was on the phone with a former top official at U.S.A. Hockey — a man whose name I knew well from having grown up a hockey fan. He was supposed to give me an interview for my master’s project, a large journalism assignment that most other graduate students would compare to a thesis. I was excited for the help and also excited to speak to someone so well known to me. Then he said it.

“I’m sorry. I want to help you, but I can’t understand you.”

His words did not shock me; I had known for a long time that my voice was failing me. But what he said, with unintended cruel clarity, signaled to me that the moment had come. Later that day I — a 23-year-old Tennessee boy making good in New York City — called my mother and cried.

I was born in Nashville in the summer of 1990. A year later, it became clear to my parents that I could not see well, and by the time I was 2 years old, tests revealed that I was completely blind. As far as my family was concerned, this was of no matter. I was raised to think with no limits. For many years I attended public schools with sighted students, getting in trouble for the usual things like running in the halls. On my own decision, I began attending the state school for the blind when I was 11, where I played sports and graduated as the school’s valedictorian.

When I was a senior in high school, a doctor noticed during a routine exam that my voice sounded abnormal to him. Further testing disclosed nine noncancerous tumors located on cranial nerves, which control almost everything about how the body’s extremities work.

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Alex Hubbard is a reporter at The Tennessean, the local daily newspaper for Nashville, TN, where he has reported on neurofibromatosis, helping to raise awareness about the Children’s Tumor Foundation, NF Awareness Month and other happenings in the area. We’re proud and inspired by his story, and excited to see it in the New York Times.