Watching it is like finding money in the pocket of a coat that you haven’t worn in years.
I would fantasize about being blind or deaf. As a child or 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.
I've written before about 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 sort of edged into this, eased by a muddle of pain medication which 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.
The other day I received an e-mail from a reader in Ohio. He's given me permission to reprint it. He was responding to one of my blogs about loneliness, not the loss of speech, although he finds that the two are connected. I'd like you to read it:
To introduce myself, my name is Patrick Bowes, I'm 57 years old, Catholic with nine siblings, I grew up in Lancaster, Ohio near Columbus, and after living in the Boston area and New York I came back to Ohio. I was in the business world for 22 years and the company I was working with went through an LBO in 1990, was raped by management, and 162 people lost their jobs. I was one of a small group of employees who were convinced to roll our 401k and all other funds into the company. I lost everything and was stuck with a car lease and huge loan. I like to say I got enronned before Enron was a verb, but no one seems to get that line.
I got a job in Cincinnati but had enough of business and decided to teach because I wanted to change the world and I wanted young people to grow up to be ethical and moral individuals, no matter what their endeavors would be. It was difficult working full time and taking classes at Xavier but after a few years of hard work I graduated summa cum laude, got my Master's, and was fortunate to get a job as teacher of gifted students in the Cincinnati area. I was named teacher of the year twice for our school, once for the district, and was nominated for state teacher of the year. I loved teaching. I moved to Mason, Ohio, taught two years here and then became coordinator of gifted services, a position presently hold.
I have always had trouble with cold sores inside my mouth and have problems with my teeth since childhood. My dentist did a brush biopsy of a canker sore in 2001 and it came back as nothing. For the next four or five years various issues arose and always the tests were negative. In 2005 I had a particularly stubborn canker sore in the back left area of my tongue and after some time a biopsy indicated it was cancer. Several surgeries followed and the cancer kept returning and on December 10, 2009 I had my entire tongue removed. The flap became infected and was misdiagnosed by a P.A. and I nearly died. Emergency surgery was performed in late December, 2005, and I spent the next three months in the hospital and a nursing home. I was released only to get very sick at home, and spent a couple of months with my dad and family in Lancaster recovering. A pet scan in May was clear but a pet scan on 11/20/10 showed an uptake in my chin area and I am going to the doctor this afternoon to have it checked. He thinks it may be scar tissue and I am hoping and praying he is right.
I had absolutely no intention of writing to you because I am sure you get a lot of these notes and you are a very busy man. I wrote to you spontaneously last night, I suppose because I had a very rough day. I attended a workshop about gifted students and I had much to say but became extremely frustrated when I was unable to say it of course. I tried to write quickly with my finger on an iPad app that provides a blank white slate. The presenter, a friend, came over to read it and everything in the room stopped. She then said she had to go get her glasses to read it, then came back and misinterpreted what I was trying to say. I tried to explain but by then it was too late and it was time for the discussion to move on.
I have used proloquo2go, an app on my iPad for text-to-speech purposes and I've used similar devices, some quite expensive. They all lack the same thing -- the ability to stress certain words, add inflection, adjust pace, etc. Some of that can be done but it's not so simple when you are trying to make a point in a meeting. In previous meetings I have used the text to speech and no matter how clear and loud it sounds to me, 100% of the time I get, "Play that again."
My job typically involved a lot of time on the phone and although there are devices that work with the phone I haven't had any luck with them. I try to get people to text or use instant messaging but the folks I work with just are not comfortable with it. It's rather like people not knowing sign language. A mute is trying to communicate with them through a communication method that works, but there just aren't enough people willing to learn to sign. I tried again and again in the meeting to communicate. My mind was racing, I knew the answers to questions and wanted to share but it became so frustrating that I later had a mini breakdown. I think it can't work in that job.
I do not find the job rewarding but I want to contribute to life, I want to join the national discussion of various issues. I have started a blog, but as you noted in your blog about loneliness, everybody and his brother has a blog these days. I have created a website and have written a few blogs about the cancer situation, as well as a couple of other issues. I've been working on the site, namely a WWII and Vietnam War section for students and anyone interested in those subjects and now that I have those finished I want to write more blogs about issues facing our country - education, immigration, war, politics, even an occasional movie review. :-)
I am considering a book about my journey and if I go that way I would probably stop blogging about that issue. The very few readers I have provided positive feedback but that's a friendly audience. I enjoy writing and see it as a way to continue to teach, continue to serve others, but just in a different way. I am also investigating online classes to take and to teach. I am alive, but I do not want to just survive, I want to live. I never married, which is a huge regret, but here I am and I can't change the past. I've dated enough to know that at my age and with my situation I am not going to meet a woman, but I still want to live a full life and I think my avenue is writing.
Best, Patrick Bowes
Patrick, this is Roger again. Your story had a very strong impact on me. You express pain, frustration and regret, but I suspect you feel even more than you describe. On point after point, I've been there and done that. I know all about Proloquo2go, and writing on iPads, and text-to-speech. I know all about people saying "Play that again" and "I can't understand 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. I know how people respond as if they're being sensitive and polite, but unconsciously they've started to think of you as a little slow.
What I want to share today is the difficult truth as I've come to understand it. Patrick, there's not much you and I can do. We're stuck with this and there's no fix. We're fortunate that we're writers and can express ourselves that way, but in a meeting or a group conversation we're always going to be six doughnuts short of a dozen. We want to contribute and people want us to, but it just doesn't work.
I'm about to get even more discouraging. In the back of my head there's the idea that if I'm pessimistic enough, maybe somebody with a bright idea will pop out of the woodwork and give us a solution. You and me, and thousands of others who don't have my advantage of a loving wife, and our mutual advantage of lots relatives, and our ability to express ourselves in writing. People who are single and alone and feel abandoned and powerless and -- without a voice.
I'm going to write from my experience. I can't write for you. 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. I still actually have my larynx, my voice box and even my tongue, but there's nothing I can do with them to make sounds. I won't go into the details, but trust me.
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 iPod, (2) type spoken words for text-to-speech; (3) select words and phrases from the selection on Proloquo or similar, more elaborate, programs and devices; or (4) use some version of sign language.
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 much 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.
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 which 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.
Writing on little note pads is quick and easy, but your messages have to be short, and people have to be able to read them. I use printed letters. I identified strongly when you wrote, "She then said she had to go get her glasses to read it, then came back and misinterpreted what I was trying to say." It amazes me how many people forget they use reading glasses. They take your notepad and move it closer or further 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 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 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.
The good people at Cereproc in Edinburgh are working on a computer voice that is based on recordings of my own voice. They've made great progress, and I hope to use it when narrating segments of our new TV show. But it doesn't help me type any better. You write about the problems of stressing certain words, adding inflection, adjusting pace, and so on. These areas are almost as important as the words themselves in getting a message across. Software exists that tries to do that, but it's a slow process embedding the instructions and people can't be expected to wait.
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 threaten to 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. Patrick, I'm sure you've envied those with the luxury of indulging in Lip Flap. It helps make social situations easier -- if you can talk.
I find that I'm content with my own company, or that of someone close and understanding, like Chaz. 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. If you can't speak, I think that's pretty much what you tend to do. You keep yourself company. I don't feel especially lonely. 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.
I said maybe someone would read this and solve our problems. I doubt anyone will. The only solution is acceptance.
Patrick's blog is at : PatBowes.com
Pat has written to me again, and I boldfaced his message to make it easier to find below.