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Disability

I Lost My Voice, but Help Others Find Theirs

Credit...Dadu Shin

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.

The diagnosis was neurofibromatosis Type 2, a disease caused by an inherited or spontaneous genetic mutation. About 100,000 Americans have one of the three forms of NF — NF Type 1, NF Type 2 or schwannomatosis, according to the National Institute of Neurological Disorders and Stroke. There is no cure, and extensive monitoring and treatment of individual symptoms is currently the recommended treatment.

The diagnosis was a shock, but it did not stop me from continuing my education. I went on to Middle Tennessee State University, where I served as both the sports and news editor of the school paper. I then became the first journalism student from my school to be admitted to the prestigious graduate program at Columbia and the first blind person to study in that program, according to institutional memories at both places. It was official: I was going to be a journalist.

My time at Columbia marked a great achievement for me, the first in my family to attend an Ivy League school, but it was also one of the darkest periods of my life. I had never considered merely being blind would prevent me from doing anything, but the tumors were slowly paralyzing my vocal cords and most of my tongue, sending my voice into a raspy spiral and making speech laborious. My college friends back in Tennessee had mostly met me when my throat was in much better shape, and as it worsened, they more or less grew accustomed to it as I did. But in New York I met people who clearly struggled to understand me and felt constricted by politeness and a well-meaning desire not to offend.

I avoided parties for fear they would be too loud. I stopped eating out because I couldn’t eat much and was embarrassed that I might choke. I would sometimes sit for minutes at a time near someone I wanted to speak to, picking out the words I could best articulate, only to drop the whole plan and resign myself to silence.

I often overcame preconceptions about disability as a blind person with a sense of humor, but I soon discovered that when you are blind and then open your mouth to speak with a speech impediment, it is most likely that you are only confirming what they have already anticipated; you must have some deeper problem in the brain.

At Columbia, I began to experience a swift deterioration in my voice, or it seemed swift to me. During the school year, I had a minor surgery to try to increase my voice volume. In July 2014 after I graduated, I had a more involved surgery; that and a few other serious health complications knocked me flat for a while.

During this whole time I was searching for work. In October 2014 I began writing for The Contributor, Nashville’s street paper, focusing on poverty, and then moved on to covering courts and legal affairs on a freelance basis for the Nashville Scene, an alt weekly. The entire time I just fought with my voice. I eventually gave up most phone use in favor of a relay-operator service, which allows me to type to an operator who speaks to the person on the line. It wasn’t a perfect system, but it probably saved my career.

I had a great editor at the Scene, Jim Ridley, who was just an angel of a man. I was strongly considering hanging it up, applying for disability and hitting the couch. That’s how discouraged I was when Jim came along. He didn’t care anything about my health or any perceived limitations. He just wanted to see me write, and he trusted me without question.

Jim, who died a little over a year ago, sustained my career long enough for the next opportunity to open up. A former professor let me know about a job at The Tennessean, a daily paper owned by Gannett. It was very simple, part-time work, mostly rewrite and handling letters to the editor. But they let me report some, and it grew into a full-time job.

Still, the deterioration of my voice was making reporting too difficult. So I asked to move behind the scenes. The request was one of the most painful things I have had to endure. Being a top-flight reporter was all I wanted to do.

I was given extra editing duties on the opinion page. Though it is not the same as chasing down breaking news, I have found that taking a piece of writing that may need a little guidance and seeing it shape up into a concise, informative column brings its own type of joy. I also occasionally get to write an opinion piece, which allows me to exercise my writing muscle and think critically.

I did make mistakes along the way. Concerned that my career would be affected if I revealed too much, and also not wanting to appear overly dramatic, I began withholding information about my health, even from people I loved and trusted. Doing this only created more questions in the minds of people who otherwise would have offered genuine support. Some of them fell away from me, and unable and unwilling to explain my plight, I let them go. I’m still recovering from this decision.

I am often told that I am an inspiration — usually because I hold down a job in a field not known for hosting very many disabled people. I appreciate what people mean by this, and honestly sometimes I’m surprised by it, too. But just as often I’m baffled by the complete separation between what I do for a living and the rest of my life.

I am not just a blind person who developed a severe speech impediment but didn’t give up on his career dream. I am a 26-year-old man with a quick wit, who is fluent in hockey, is widely read and can name every United States president in order, backward.

A doctor recently told me that my right vocal cord is out completely. This was not surprising. I suspect that it has probably been gone for as long as a year. Fortunately for me, and somewhat unusually, it hasn’t collapsed, which is great news for my airway.

But it means that sometimes I’m not doing much more than whispering. There are good days and bad days for it; I have no insight into when they come and go.

But I have no plans to quit talking to you, so don’t quit talking to me.

Alex Hubbard is an editor and reporter at The Tennessean in Nashville. Twitter @alexhubbard7

Disability is a weekly series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field.

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