What my disability developed later in life taught me
A little over seven years ago I went to an early evening Mass in the chapel upstairs that serves the 20 or so Jesuits who live above the offices of America Media here in Manhattan. By Communion time, I felt a strange sensation in my left ear, like when you get water lodged in your ear after a swim. By the end of Mass, the sensation had become a loud, painful, pinging sound. By the end of dinner, I had lost all my hearing in that ear.
I called the doctor first thing in the morning, but it was already too late. Since I already had reduced hearing in my right ear, in the course of those two or three hours I went from having 90 percent of the hearing I was born with to having less than half of it. I never recovered the hearing I lost that night and have suffered from a maddening tinnitus ever since, which sounds something like a drill driving through tile. The doctors call what happened to me idiopathic sudden sensorineural hearing loss, which is a fancy way of saying that I went deaf abruptly and no one really knows why. They still don’t. It happens to so few people that there’s very little research about it and no effective treatment.
I had been sick before, of course. As a child, I was often hospitalized or in bed with painful back and leg problems, the result of a birth defect that modern medicine was able to correct. But I had never experienced a health event on such a scale as an adult, and it has taken every day of the last seven years to learn how to live with my disability. I’m still learning; I’m still figuring out where to sit or stand at any given moment in order to increase my chances of hearing something. Depending on the shape of the room or the ceiling, or whether the floor is tiled or carpeted, I either hear some of what is being said or almost none of it. At first I was embarrassed and tried to fake my way through. Now, I find it’s easier for both my company and me if I just tell people that, in fact, I have a disability.
I know that many people have far more challenging disabilities than mine. Still, it has not been easy. I’ve learned, for example, that while people are often sympathetic toward those who are visually impaired, they can be quite impatient and even rude with people who are hearing impaired. People resent having to repeat something because I didn’t hear it, or they get frustrated because I didn’t hear the punchline of their joke and now their timing is ruined. Sometimes they just say “forget about it.” If I may, a piece of unsolicited advice: “Forget about it” is just about the most offensive thing you can say to someone with a hearing loss. If it was important enough to say in the first place, then say it again. It’s not our fault that we didn’t hear you.
For the most part, however, people are understanding and compassionate. In that sense, I’m grateful for my disability. The experience reminds me that I have many people in my life who love me and care about me. I’m also grateful because my disability has made me a better man. I used to be one of those people who might say, “Forget about it.” Now, in some modest way, I’m more in touch with the world’s pain, with the countless challenges, seen and unseen, that so many people encounter every day. It also prompted me to help tell their stories, as we do in this issue. When we listen to the stories of people living with disabilities, we all benefit. As one priest told the reporter of this week’s cover story: “Those who are disabled, brothers and sisters so often excluded and ignored, are the source of God’s grace. They are our closest encounter with Jesus.”
My modest hope is that this issue of America, as well as the complementary video and archival content on our website, will prompt a new conversation about the place of people with disabilities in the life of the church. My fervent prayer for us all is the one I have uttered daily since that turning point in my life seven years ago: Ephphatha! Be opened!