Roger Ebert remains one of the most influential voices in film, but when a failed surgery related to thyroid cancer left him without the ability to eat, drink or speak, he had to reinvent the way he communicated with the world.
After losing my speech, there was never a single day when I realised 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.
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 traveller'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 realise this so clearly before my current troubles.
Adapted from LIFE ITSELF by Roger Ebert.
Used with permission by Grand Central Publishing, 2011.
Roger Ebert has been the film critic of the Chicago Sun-Times since 1967 and his reviews are syndicated in more than 200 newspapers around the world. He won the Pulitzer Prize for criticism in 1975.
Video from Roger Ebert's moving TED Talk earlier this year.