Writer Flannery O’Connor, who suffered from lupus, wrote that illness is “always a place where there’s no company, where nobody can follow.” For a long time, I thought I understood and agreed with this.
Nearly 20 years ago, I was diagnosed with hearing loss. I was teaching large college classes and I’d started to have trouble understanding the students in the back rows.
After the hearing test at a prestigious Boston hospital, the doctor, a tired-looking guy in his 40s, stared grimly at me.
He said, “You’ve lost 25 percent of your hearing. You’ll be completely deaf someday.”
I was shocked and then panicked. My mother had been profoundly deaf. The whistle of her hearing aids was the background music of my childhood and adolescence. As her deafness grew, so did her depression and isolation. She had been alone, where nobody could follow.
“What about hearing aids?” I asked the doctor.
“They don’t help much,” he replied. He seemed intent on making me devoid of hope.
I left the hospital in tears. I wasn’t married. I wondered how I would support myself if I grew completely deaf. What would I do?
I couldn’t find answers. After the first doctor, I went to others, but I never received any information on coping with hearing loss. No one mentioned diet, exercise and stress reduction, though in my later reading, I found evidence that these helped to stave off or even improve partial deafness.
All of this occurred during the 1980s, when New Age thinking, with its focus on the divinity of self, was on the rise. Having thrown off the “shackles of Christianity,” acquaintances informed me that I had caused my impairment by my emotional reserve. (I eventually learned that my hearing loss had a hereditary basis.) This deepened the shame that I experienced when fast-food workers and shop clerks snapped at me because I couldn’t hear them.
The slow realization that the problem was largely immutable was very difficult. I’d always been a driven person, which had allowed me, at 18, to escape a troubled Irish Catholic upbringing. In grammar school, I had been fat, shy and bullied. I had also been full of a secret determination to escape. I sought and received a scholarship to a good college, which opened me up to the world of aspirations. Later, I completed a doctorate and went on to a successful career in public health. I left what I considered my provincial religious upbringing behind. My life’s central tenet was that I alone could change it for the better.
Then came the diagnosis.
As I closed in on 40, the knowledge that I couldn’t do too much about progressive deafness seemed like a prison sentence.
“How can this be?” I wondered. The fact that competence and hard work didn’t vanquish disability horrified me.
Still, I adjusted. I bought hearing aids, which, while expensive and imperfect, helped. And if I were to be deaf, I didn’t want to be in the unforgiving city, so I fulfilled a dream of moving to Maine, where I bought a cottage in a pretty, faded town near my new workplace.
The community’s prosperity had declined in tandem with the mills that had once sustained it, but it was quiet. So I became quiet.
On morning walks, I watched oak leaves shift in the light and gulls swoop in slow circles over the great river that anchored the town. I began to look more closely at the world: the worn midlife faces of people with whom I sat at meetings associated with my job, the tired smiles of single moms who cashiered in the supermarket. Ordinary people.
“These are the people Jesus loved,” I thought, for after a long absence, I had gone back to Mass. When I’d been in grad school outside Boston, most of my friends were secular humanists -- good people aghast at religion. I didn’t agree, but said nothing; as a former fat kid, I didn’t want them to think me weird.
But now I was going deaf, so who cared what they thought? I needed a community of faith.
“People here have hard lives,” someone said of St. Joseph’s Church. I agreed. I could see it on people’s faces at Mass when they occasionally wept, which they tried to hide, as I did. I also saw relief from that hardness when we laughed together, which, strangely, we did a lot. With my neighbors, I leaned forward to hear the Word, which now unexpectedly resonated with great force in my imperfect ears.
Gradually, the bad moments associated with disability often, though not always, turned into good moments.
Once, I called my friend Jon for solace. I was traveling through Tampa when an angry TSA screener berated me because I asked her to repeat herself.
Jon’s cousin happened to be visiting him at the time. I liked Elaine, though I was a little afraid of her. She was from Brooklyn and wore huge hearing aids over both ears.
Elaine was incensed when she heard my story.
“Why don’t you tell people you’re deaf?” she yelled. “Yeah, tell them! Let them help you! Put it on them!”
So I did. I told people I was deaf and asked for patience. I was astonished as they told me about their deaf parents or confessed, “You know, I think I’m losing some hearing.” I began to realize that everyone struggled with brokenness, not just me.
I’m not yet totally deaf. Today, my loss is a little worse than moderate. I can still work. But I see now that with the original diagnosis, what I feared most was not deafness but loneliness -- going somewhere where nobody could follow. I was afraid of leaving behind the cacophony of our culture, the endless noise built on the terror of silence and emptiness.
The changes that deafness has brought to my life partly encompass the solitary terrain of illness and disability. But paradoxically, deafness has also forced me to ask for help, to discard the need to go it alone. Thus, it has made me more present in the lives of others; it is as if silence has brought me more fully into the world. How loudly it rings with the voice of God.
