49
I WOULD FANTASIZE about being blind or deaf. As a child of four or five I went through a weird stage where while lying in bed at night I would pretend I was paralyzed and imagine people coming to admire the brave little saint. I smiled and told them to pray the rosary. It never occurred to me that I might lose my voice. People on the street would try to sell those little cards showing a few symbols of sign language, and I assumed they were con artists.
On campus, some group had a day every year where their members walked around blindfolded to raise money for charity. They depended on the kindness of strangers. They said they were “finding out what it’s like to be blind.” They weren’t doing any such thing. They were finding out what it’s like to be blindfolded for a day. Someone who doesn’t speak for a day has no idea what it’s like to not speak at all. If you’re in a country where no one understands you, that’s not the same, because you can speak.
After losing my speech, there was never a single day when I realized that was what had happened. It became real to me gradually over a period of months, as one reconstruction surgery and then another failed. I edged into it, eased by a muddle of pain medication that for the first year made things foggy in general. My throat didn’t hurt; my shoulders and legs were giving me the trouble, after they had been plundered for spare parts.
Blind people develop a more acute sense of hearing. Deaf people can better notice events on the periphery and comprehend the quick movements of lips and sign language. What about people who lose the ability to speak? We expand other ways of communicating. I can use my own pidgin sign language, combining waving, pointing, shrugging, slapping my forehead, tracing letters on my palm, mime, charades, and more uses of “thumbs-up” and “thumbs-down” than I ever dreamed of. Yet I know all about people responding “I don’t know what you’re saying.” I especially know about having the answer and not being able to express it, and how the flow of a meeting gets away from you while you’re desperately trying to write, or type, or signal what you want to say. People respond as if they’re being sensitive and polite, but unconsciously they’ve started to think of me as a little slow.
I’m stuck with this and there’s no fix. I’m fortunate that I’m a writer and can express myself that way, but in a meeting or a group conversation I’m always behind. I want to contribute and people want me to, but it just doesn’t work. In the back of my head there’s the hope that maybe somebody with a bright idea will pop out of the woodwork and give me a solution. Not in my lifetime. I began to find some measure of serenity when I finally accepted that I would never speak again, and that was that. I went through three surgeries intended to restore some measure of speech, however imperfect. All three failed. All three removed just a little more flesh in an unsuccessful attempt to attach spare parts.
So how can I communicate—not on the Internet, which I do easily, but in person at a meeting, a dinner party, or a social situation? I can (1) write by hand or on an iPad, (2) type spoken words for text to speech, or (3) select words and phrases from the selection on Proloquo or similar, more elaborate programs and devices. Signing doesn’t work at meetings unless you want to say things like yes, no, so-so, or shrug your shoulders—things everybody understands. True sign language is an elegant and complete medium and I have learned something about it, but one thing I’ve learned is that most people don’t understand it and never will. I may be inept, but in my experience of the Proloquo class of programs, the visual menus are slow and frustrating and hard to even see on a device like, for example, the iPhone. You find yourself with phrases like you find in those traveler’s books: Where is the toilet? What is the price? I am sick and need a doctor. Fill it up. My mind goes back to Monty Python’s Hungarian Phrase Book sketch.
Text to speech has the advantage of being more precise and responsive. You type it, a program says it. There are purpose-built voice devices that are said to be quite helpful, but I find that my laptop computer is handiest. I’ve tried several voices and find that Alex, which comes built into the Macintosh, is the easiest for most people to understand. Chaz prefers Lawrence and his British accent.
Writing on little notepads is quick and easy, but your messages have to be short, and people have to be able to read them. It amazes me how many people forget they use reading glasses. They take your notepad and move it closer or farther away from their eyes, trying to get it into focus, and finally say, “I think I need my reading glasses,” and then start patting their pockets or searching through their purses. Meanwhile, everyone else in the group is smiling politely. If even one of them tries to get in a few quick words, the conversation moves on and the moment is lost.
A related problem is that some people don’t seem to keep conversations loaded in current memory. If something I’ve written is a reference or a punch line to what was said two comments ago, they have no idea what I’m talking about. If I try to explain, the flow is even more seriously interrupted. Do people assume I make random statements out of context? Fifty years as a newspaperman have trained me to listen and follow through. The conversations of some people seem to drift in an eternal present. I didn’t realize this so clearly before my current troubles.
Here’s the point I’m at now. I find that I can weather about an hour of a business meeting before the bottled-up thoughts make my head explode. It’s so hard for me to express myself that I’ve become aware of the words ordinary people waste. It used to drive Gene Siskel crazy when people would call him on the phone and tell him where they were calling from and that they’d tried earlier or meant to call yesterday and ask him how the weather was. “Lip flap,” he called it. “What is the message?” he would interrupt.
At dinner parties or social gatherings, I deliberately dial down and just enjoy the company and conversation. I’ve given up trying to participate very much. People mean well, but it just doesn’t work for me. I keep myself company. I don’t feel especially lonely by myself. I feel lonelier at a party, when I’m sitting to one side. I like our family and close friends because they’re used to me. But I’m never going to speak, and I may as well make the best of it.
At first after losing my speech, I could not read easily, because sedation had undermined my attention span. I was depressed. I could turn on the TV, but why? My wife brought a wonderful DVD player to my hospital room, but I could not make myself watch movies. My life was stale and profitless. I would spend hours in a murky stupor. Knowing I had always been reading a book, my concerned wife began reading the mainstays to me: Jane Austen and Charles Dickens. I couldn’t follow.
Curiously, my love of reading finally returned after I picked up Cormac McCarthy’s Suttree, a book I had already read not long before my first surgery. Now I read it two more times, reentering the same experience, the same occult and visionary prose, the life of Suttree so urgently evoked. As rarely before, a book became tactile to me. When Suttree stopped at the bus station for a grilled cheese, I ate it, and the pickle, and drank the black coffee. I began to live again through this desperate man’s sad life. In my chilly hospital room late at night, a blanket pulled around me in a wheelchair, a pool of light on the page, I found myself drawn into the story of Suttree with an intensity I hadn’t felt from fiction in years. I hungered for that book. I yearned toward it. Suttree was alive. He lived for me. How strange that a novel about such a desperate man could pull me back into living. I had no use for happy characters. What did they know?