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:
Dear Roger,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.
You and Patrick need to learn ASL. The sooner the better, and as adults it's hard to learn a new language, I know.
I am a hearing, speaking former director of a service center for the Deaf. I stumbled into the job when they were desperate for someone, and I was between jobs and willing. I knew no ASL when I started, other than a few of the letters of the alphabet. There were 6 people working there, 5 were deaf and counted ASL as their primary language. 2 could not speak at all, 1 could speak but not very well and did not like doing so, 1 could communicate with me relatively easily speech to speech and one was hearing like me and bi-lingual.
In other words, everybody in the place could communicate with each other, but I could only easily communicate with 2, and only 1 in her native language.
It doesn't matter if most of the people in your life don't know ASL; it only matters that you know it. The more fluent you become, the better a competent ASL interpreter can work with you. You'll regain pauses, word choice, inflection, stress, etc. You'll be able to make telephone calls again.
I was only at the Center for a year and I learned only the most rudimentary sign language. By the time I left I could follow a conversation and glean the topic but not the details, and I still couldn't participate in a free-flowing conversation between competent ASL speakers.
Initially it's odd to have this other person as, essentially, your voice. You get used to it. I had one ASL interpreter I worked with almost exclusively to run staff meetings and Board meetings and by the time my tenure in the job was over, it was as natural to me to hear myself through her signs as it was to recognize my own handwriting from a distance.
ASL is the native language of the Deaf; it's hard for hearing people to grasp the grammar and syntax but it's harder, still, for people who cannot speak to be without a natural language.
It's late, I'm exhausted, I've been grading papers and final exams all day—yet these profound words from Patrick and Roger have moved me beyond the telling.
I'm a professor of communication. I'm an oral storyteller. I know the power of speech— yet, have I ever really known?
In this moment, I only know that I will more deeply appreciate my ability to talk. I am enormously grateful for your words. Even Siskel's objection to wasted words has unpacked itself in my mind. My teaching, my conversations, my writing might usefully be a little more 140-twitter, a bit more haiku.
Sunwolf
@WordWhispers
As for a voice, I was around for the Siskel and Ebert days, and ironically it is now that I hear you LOUDER than when you spoke. I lived in Chicago until my family moved to New Jersey, but I was too young to have read your column. So said, there is a spirit in Chicago- I went to the Francis Parker School, and we were told: "If you are bad you are going across the street to the Latin School!" Just as I attend/compose for CHR, the church the Taylor Hackford used in Devil's Advocate for the scene during which Charleze Theron in naked in the front pew, convinced she's been with Al Pacino, the Devil all day. Keanu was told: "she's over there! she's headed for the church of the heavenly hope!" In fact it's a the Episcopal Church of the Heavenly Rest http://www.heavenlyrest.org - Carl Bernstein knows the church well. "Oh! You mean, 'The Church of the Overly Dressed!" Yup.
I'm not only a composer there: I'm a lone wolf converIrish-Austrian-Russian Jew. How else could I have met Carl? Ask him my story: I had an epiphany in Palm Beach where after surviving a storm my friend and I ought to have died in, I gave up on God for 8 hours, cursed Christ, god, religion. I blindly at 4 AM in a house that John Lennon wanted to rent one Easter weekend (he was refused! Sourh Africans don't swoon to celebrities as we do). During a storm where I put out to die for being associated with Jews, I had a St. Clare necklace on that I pretended to throw overboard but kept. From a huge library, I blindly picked "The Final Days" Woodward/Bernstein, flipped the pages in a drunken yet focused elated to be alive yet cursing religion - with that I my index finger landed on p 336, where James ST CLAIR, Ford's Chief Of Staff, was the only proper noun on the page - and it appeared SEVENTEEN TIMES> I literally got a chill up my back as hours earlier I my chances of dying anonymously in the ocean were 99% - I had NO "near death experience," but I *did* have that experience, most have not had it and it cannot be imagined and when you're in ot you say: "NOT WHAT IT'S CRACKED UP TO BE. DEATH CAME FOR ME TOO EARLY. I ALWAYS WONDERED HOW I would die, and this is it? THIS?!" Once you pass that line, basically Jump off the cliff into death, all life thereafter is Living on Borrowed time.
I think you have that positive attitude. I see you have the same intolerance for BS because you realize there just isn't time.
I am assuming both you men use legal pads/notebooks and Montblanc or your pen-of-the-night and eschew anyone getting ahead with inflection and speed. You point out exactly why I prefer Steve Martin *reading* SHOPGIRL himself than looking at plain text which is cold, getting better as you note, but unable to be a quality tool of expression. I was a lawyer in New York, now in New Jersey - I have aspirations such as your reader PATRICK BOWES to teach as many kids as possible as efficiently as possible and keep it FUN for them, which to me os key.
So said, the move from speaking like a NYC lawyer to a New Jersey music clinical experimental therapist was a HUGE stretch, and 1/2 the people 'get' what I do, 1/2 mock me until they can't come up with more VERY harsh insults: I was going to blog all those!
Nobody tuned into your show 1) to see you - sorry! or 2) to hear Gene - RIP. We all tuned in for your word of the wisdom of what the common American, like me, might think of a movie. Now we get that and live opinion, which is fantastic. As you suggest to Mr. Bowes, eventually you accept it and as Dave Matthews wrote in what is my, his mother's and probably *his* favorite song, THE BEST OF WHAT'S AROUND - which is what Dave did after the murder of his sister, death of a band member's infant and then a band member, the band took 2011 off for REST, you have carried on. Then again, just as I sing like Bob Dylan as a woman giving birth, even when I think I sound great I listen back and, well, I cannot sing in tune.
But I do speak - and as the Jewish lawyer convert, of course I'm called on for the Epistles - and it's very quiet when 400 perfect looking perfectly dressed group reads along thinking "I could read this better." Still, your article and Pat's email have once again made me appreciate the gift of Simple speech - for this I thank you.
Respectfully,
/Ian Andrew Schneider/
I thank both of you, Mr. Bowes and Mr. Ebert, for sharing your private hell with us. I won't insult either of you by equating anything I've experienced with your situations, but I would like to posit that it seems you've touched on an aspect of great significance. Namely, that our society can no longer afford to marginalize the affirmed in the workplace.
It's difficult enough for perfectly healthy Americans to find work; the only chance anyone not in great shape has for gainful employment is to already have established himself or herself in a profession--not merely a job--before things went south. How many Boweses and Eberts are out there who had been working a dead-end job when they suffered a silencing health issue? How are they supposed to contribute to society, provide for themselves and their families and compete with others?
I don't claim to have an answer, but it strikes me that our national conversation has been contented for years that Americans with health concerns can become Walmart greeters. It's not just employers failing to offer jobs to the affirmed; we've all witnessed employees being openly resentful of their coworkers with health concerns. I've personally seen people mocked, insulted and deliberately put in situations contrary to their known limitations just to prove a point, and I suspect I'm not alone in having to stomach such behavior on occasion. I accept Darwinism as a tenet of science, but I cannot accept it as part of our purported values as a society. What, then, can be done to find a place for those of us with health concerns? Acceptance, I'm afraid, does not pay the bills or provide a sense of dignity.
I worked as a text-to-speech developer for many years, and eventually left the industry, disillusioned by the soul-destroying big-corp phone mazes that I was being assigned to work on. Trying to force the big insurance company's computer, that the desperate mother whose child is sick is trying to talk to, to respond more clearly, loses its charm quickly. Your post has shown me that there are still good reasons to return to this field. So maybe it's done some good :)
Roger, if someone that is able to speak were trying to communicate with you, would you appreciate the effort if they decided to confne themselves to the same media you are able to use? That would put you on equal footing (in fact, you would be better at communication than they would, since you're used to those methods). Or would that be an empty gesture, much like those that wore blindfolds in your example?
Ebert: I've had good luck with a combo of Skype and typing (hey talk, I type).
Just a crazy idea:
I don't think an iPad is the right tool to generate speech.
Aren't there any fancy devices where you can use other muscles/your hole hands/fingers/etc to represent the tongue, throat and lips?
I am not sure if it's possible, but being a computer programmer, if I ever lost my speech I would start by creating some gloves that can be used like that. maybe one finger controls how open the throat is, another controls the position of the tongue, etc.
Imagine a device that is basically two globes put together, with a speaker. You put your hands in when you want to talk, take them off when you are done.
Dunno, I wouldn't just give up -- there has to be something faster and better than Ye Olde Text-To-Speech. This is 2010, dammit.
Like everyone, I had an unusually difficult childhood. In particular, in my family everyone was allowed to interrupt me, but I was not allowed to interrupt anyone. I tend to choose my words carefully, and to this day one of the fastest and surest ways to make me angry is to ask me a question, then interrupt my answer just to repeat the question-- interrupt not because I'm on the wrong track, mind you, but just because... well, for no reason exactly.
My brother has early-onset Parkinson's disease. He has a permanent poker face, and his voice is becoming gradually unintelligible. For a couple of reasons I can understand him better than anyone else in the family can, to the point where I've sometimes become his interpreter. I know that his frustration with the disease is more than I can imagine, and I do my best. I strain to listen, I guess at what I can't catch, and I put a lot of effort into making it all look effortless.
About the only upside of all of this is that I've become a good listener. A couple of my friends over the years have suspected me of being a mind-reader. But in a way that just makes it worse when other people don't listen, when they hear only what they want to hear, when someone asks me a question I've already answered or gives me the answer to a question different from the one I asked.
It can be a terrible thing to get used to. Being unable to present the solution in a business meeting is bad enough, but there's nothing quite like talking from the heart to a loved one who you know will completely miss the point, or just ignore you.
What else can we do but remind ourselves that this frustration is universal, that few thinking people ever really feel understood, that no poet is ever really happy with a poem. Or if we're really desperate we can think back on those moments of connection, seeing someone get it, and think that they wouldn't be so precious if they happened every day. Right.
Roger, while I think on this, and there is a lot to think about, because we take communication so for granted when it is anything but simple, would you check the html for the link to Patrick's website? Thank you.
Of all the blog I check, this is pretty much the only one that gets me to actually slow down enough to read it word for word rather than just scan...
I can imagine the frustration (as far as one can get without actually going through it yourself I guess). I hope people around you find a way to get back into the conversation and wish both of you all the best in dealing with any of our inabilities to do so, and with accepting what needs to be accepted.
Dear Mr. Ebert,
People like you and Patrick make me smile and instill a focus on a better tomorrow. You know the one. The one where the body heals. Where the upper classes looks out for the lower classes. That coming day when the inequalities of this world goes to bed. It is a tough pill to swallow when it is not a level playing field(not battlefield). Life can be a game but only if it knows how to be fun. I hit rock bottom this year and it was a bittersweet defeat. I have considered your words on films a source of mutual admiration. You seem to capture not just the directors and actors but all technical creators' efforts to tell a story in an universal medium. 127 hours comes to mind as a film that made me face myself and realize I have shut everyone out of my life including my own mind. Too often do we disguise our flaws with acceptance; an intervention has to pick us up and redirect us to cleanse our missteps. I use to say to myself I am never going to meet someone that is going to make me want to be the best I can be. How come when I least expected anything to go my way THAT is when it all changed?
Roger, this piece is fascinating and moving. You and Patrick made me understand--or at least partially understand--what you go through every day. I try not to take my health and my abilities for granted. I hope that technology will continue to evolve and develop a communication system for you that is less frustrating. We are fortunate to live in the age of computers; imagine being unable to speak 100 years ago.
I dislike small talk, and from now on when I encounter it, the thought balloon above my head will say "lip flap." :)
I would love to meet you one day--Ebertfest 2011?--and thank you for all you have done for me this year. If that ever happens, I know that I would be rendered speechless for at least a few seconds, but most of what I'd want to say would be written all over my face. What a hero you are to me.
I guess you're a John Lennon fan. Did you ever get to meet him?
Mr. Ebert, you continue to inspire with every blog. I feel that you're becoming an activist without even trying. Incredibly moving.
Mr. Ebert, despite your frustrating condition, at least when you write something, especially in your blogs, you are practically assured of a response. I would think that would be unguent for your soul. If I write something and I elicit a response 5% of the time, I am pathetically grateful. All a mere mortal can do is keep writing and hope to make a connection.
Maybe a Glenn Beck-style chalkboard, small erasable whiteboard, or 24x36 drawing pad would help facilitate communication in group settings. If you write large enough and hold up your board, most people at a table should be able to read it simultaneously. Granted, it's bulky and intrusive to have a big board on the table in front of you, and a hassle to carry around, but perhaps it could help.
Roger,
Through this post you have given me a greater appreciation of my own voice, one of many things I've surely taken for granted. I have also realized I don't know you're speaking voice as I've only experienced you through your blog. I suppose I should go find a video with you speaking about something passionately so I'll know how to hear your voice in my head when I'm reading your posts. Then again, I suppose that's the nature of the medium, I rarely know what the author of a book actually sounds like while I'm reading his or her words. The writing voice is often very different from the speaking voice anyway.
Peace,
Collin
Patrick Bowes' letter really drove home for me what it must be like to lose the power of speech. Thank you for reprinting it.
I have very little experience with voice software and I am reluctant to mention it in case it is horrible, but Dragon Naturally Speaking was decent last I looked.
Cheer up, Roger! You never know how things may turn out with today's medical research :)
This is beautiful. Thank you for sharing this.
Let me start with the fact that I'll never completely understand what you go through because I do have the ability to speak and that choice that you don't have. But, even with the ability to speak, I appreciate the internet and instant messaging (twitter, etc.) because they get rid of that "lip flap" that i find so irritating. When one is forced to communicate this way, the results tend to be more concise, complete, honest and actually useful. People tend to share what's essential without all the fluff and nonsense. I prefer texting to talking on the phone for instance. It's sad that that both of you, and I'm sure others, don't have the appreciative audience that would make your attempts to communicate with a keyboard more effective. I'm pretty sure Roger types as quickly as a person speaks. If people were to "listen", while studying his face for expression and emotion, perhaps communication would be more effective. Sadly, there's too many who won't take the time. Strange that these same people can go to a movie with subtitles and be just fine. Maybe it's because they have to shut up and listen in a theater. Listening is a lost art, especially when people can speak.
"I'm never going to speak, and I may as well make the best of it. ... The only solution is acceptance."
Truth may be beauty, but it's also brutal. The response you make to such a personal cataclysm is less than satisfying, to say the least--but of course you're right: So often, the only "solution" to life's troubles is an effort of will, the willingness to accept the will of the Other, the thing outside of one's control. To do otherwise is to die. It's the existential/spiritual/psychological (take your pick) equivalent of one of my favorite jokes: "Doctor, it hurts when I do this." "Don't do that." A simple approach, both elegant and terrifying.
And you can roll your eyes, but thank you; your suffering--and Mr. Bowes', and everyone else whose problems far exceed my own--reminds me to shut the f-ck up and quit whining and move forward, one more step.
p.s. If I see you at Ebertfest, Roger, I think I'll use a notepad to say Hi. It's only polite to speak the language of the natives.
Roger, I feel for you and Patrick. As John sang many years ago, "You don't know what you got until you lose it," and how true that is. My heart goes out to you both. You may adapt, but that wall will always be there.
Studies have shown that deaf people have a much higher incidence of depression and suicide than people with other disabilities. That lack of communication is the reason. I'm glad you have Chaz, and Patrick, I hope you have someone close to you as well.
I wrote a dialogue-only piece in January 2007 about this very problem. It's currently posted in my blog (readers, click on my name, and use Firefox and AdBlock Plus to get past the ads). I hope you'll read it. I tried to appreciate where people such as you are coming from, but I suspect I only scratched the surface. Any suggestions for improvement would be greatly appreciated.
Roger- your link to Pat's website is broken, it needs the http:// at the beginning. Feel free to delete or not post this comment.
Your response to Patrick hits all the right spots. The key is, as you write, acceptance.Serenity comes from acceptance of reality, that which can not be changed. The weight of struggling against the current can be dropped by acceptance of what one can not change. So simple and yet so difficult.
I can speak, love to talk & make people laugh, so can only plead guilty to the impatience that comes from wanting to speak. I suspect that if the ability to speak was removed, the underused ability to listen could be a path to serenity. When I speak to others, much of the time I do not listen because I am waiting to respond, to interject, to speak. It is incredibly difficult to listen, harder than speaking as the mind must be open & still to truly listen rather than just hear another person.
I know you can no longer speak, but thank you for taking the harder role...that of listener.
Thank you, Roger and Patrick, for writing this. I've read some of Roger's earlier descriptions of his condition, but after reading this I feel like I have a much better understanding of what people who cannot speak go through.
While I'm here, I also want to say that I've been a fan of this blog for a while now, though I've never commented before. Roger, I love the clarity and honesty you bring to your writing - I look forward to each new entry. I remember that when I first started reading, and thought about some comments that I might like to make, I imagined myself addressing them to "Mr. Ebert." But through your blog I feel as if I've come to know you (even if it is one-sided), and now it feels natural to call you "Roger." ...I hope you don't mind!
Anyway, thanks for writing. And it's nice to "meet" you.
Roger & Patrick,
As a lifelong stutterer, I can sympathize with your plight.
Stuttering is one of the most misunderstood disorders. Many people think that it signifies mental retardation, or some other cognitive defect. In reality it is nothing more than a physical inability to speak fluently, and there is no correlation whatsoever between stuttering and intelligence. Stuttering manifests itself in different ways: word prolongations, repetitions, blocks (where no sound comes out at all), and facial tics/spasms.
Nobody knows what causes stuttering. There are many different theories involving genetics, deficiencies or excesses of certain neurotransmitters (such as serotonin), environmental factors, etc. Many people wrongly assume that stuttering is caused by such traits as nervousness, self-consciousness, or social awkwardness; these are effects of stuttering, not causes.
A person who stutters (PWS) is forced to interact with the world in a way very different from fluent people. Even the most trivial verbal interaction can carry with it a terrible sense of dread and social anxiety, and it is extraordinarily difficult to effectively communicate anything beyond a simple phrase. A PWS is usually incapable of expressing any of the usual subtleties that occur in conversations, because such subtleties require the rhythm, flow, and inflections of fluent speech. As a result, even when a PWS is able to get the proper words out, the speaker's intent is often misinterpreted or misunderstood.
Listeners' reactions to stuttering are varied. In my experience, almost no one responds with ridicule. In fact, I have not been directly ridiculed for stuttering even once since my middle school days. The most common negative reaction is probably impatience. There was one instance when I was trying to say "fill it up with regular, please" to a gas station attendant, and after about 3 seconds of "fff-f-f-f...", the attendant lost his composure and yelled: "Come on, hurry up! I'm busy!!" More often the impatience is concealed. One of the pet peeves of nearly every PWS is when a listener finishes their sentence for them, which for me usually happens at least several times daily.
In many cases, the listener actually experiences more anxiety than the PWS during verbal interactions. For me, this is the worst part about stuttering because even if I have learned to accept the disorder (and I have, for the most part), I will never be able to escape the guilty feeling that I am making the listener uncomfortable by speaking to them. There are only a handful of close friends and family members with whom I am comfortable having a lengthy conversation. Even then, I become frustrated when I'm unable to say what I want to, and by the time I'm able to get it out, the moment of opportunity has passed and the comment is no longer relevant. The worst case of this is when trying to tell jokes; with humor, of course, timing is everything.
Despite all these difficulties, I believe I have reached a point at which I am no longer bothered by my stuttering. Of course there will always be the anxiety associated with it, and the terrible gut-sinking feeling that I am causing other people to feel embarrassed and uncomfortable. But I have come to accept that these things are inescapable, and out of my control, and therefore not worth worrying about. In many ways, I have come to view my stuttering as a blessing. Everyone has to overcome challenges in life; it is a fundamental component to achieving true happiness, confidence, and satisfaction with oneself.
I have been through several years of speech therapy, which was helpful in many ways. In particular, I have learned to control my speech. I still stutter, but I no longer experience the knee-jerk reaction of desperately trying to force my words out. Rather, when I experience a block or prolongation, I simply stay calm and draw out the word until it rolls off my tongue. Another technique is stopping, taking a deep breath, and starting the word over again. My main technique, though, is to take a minimalist approach to speech. I generally only speak when it is necessary, and I always try my best to express thoughts in concise, lucid phrases. This has enabled me to become a very good listener, which is indeed the most important part of communication.
Stuttering has also given me a unique perspective on the way people communicate in general, and the ultimate futility of communication through language. Many people live their lives dependent on verbosity; their whole sense of being hinges on talking, talking, talking, as much as they can, all the time. For them, nothing has meaning until it is expressed verbally. They forget that language is really only a rudimentary tool to help us share our experiences, and that words are only symbols of things and can never actually [b]be[/b] the things themselves. They chatter away endlessly in order to distract themselves from the Void, the true essence of our reality that is in fact fundamentally characterized by deep, profound silence.
This has been a basic summation of my personal history and my outlook on life, and I hope it proves helpful to at least one person, even if only slightly. Roger, Patrick, and anybody else in a similar situation: as long as you maintain a positive attitude and avoid dwelling on what is out of your control, you will undoubtedly find ways to engage the world that are just as fulfilling and meaningful as your previous endeavors, even without the use of speech.
What a touching story. I commend both of you for sharing your stories publicly.
And yes, being married to a truly loving and devoted wife is always a huge asset, in sickness and in health!
Roger,
We hear your voice. It is rich and lush and satisfying. Spoken or unspoken, we love your words. Keep 'em coming.
Susan
(A new fan from Ohio)
Take a look at a court reporting machine. I've learned it, relatively late in life, and it's hard, but you can do it. I can't help you with the text-to-speech problems, but in a few months or a year with the stenowriter, you can get a great amount of common speech up to 200 wpm or higher.
Stenovations is reportedly making a keyboard that will flip from a qwerty keyboard to a steno keyboard, has no paper and works directly with a computer. I've yet to see it.
Sorry. I wish I had a more elegant solution. I've worked with people using letterboards and headsticks, with 10-key phrasewriters and speakers, and who have tried to keep up by handwriting or typing. I can tell you that the product of the steno machine is the only thing I've seen that's fast enough for one to participate with speakers. It will work as fast you can think--once you learn the language and can operate the machine. But I am well aware that it is just another gizmo, a black box, a paradigmatic work-around that creates as many problems as it solves, as Kuhn would be quick to point out.
The shame of it is that so much of the time, those that we would most like to hear, who have the most to say, are struck silent. I am sorry you cannot continue in your path, Mr. Bowes, and Roger, we miss your voice. We always will.
Patrick, I have experience with the population you serve, and from what little I read through your letter, I can say with full confidance that I wish I had a teacher like you.
Roger, you are amazing company, just the way you are. (I can only imagine meeting you in your full previous health state -- I'd be feeling more than six doughnuts short of a dozen, maybe 8 or 9. )
I mean nothing funny by this. . . but this entire post left me speechless.
My heart breaks for both of you.
This is beautiful, very moving. Thank you for writing this, Mr. Ebert.
from your fan,
Ellen in NYC
Roger and Patrick,
I've never had to deal with anything approaching the denial of conversation that both of you struggle with every day, and I hope I never do. My handwriting is not horrid, and I'm hopeful that I would have the ability to learn a form of sign, but the reality of the matter is that less of the barrier in communication is in the person trying to say something while being unable to speak, but in other people being unwilling or unable to slow the pace of communication in order to allow the fair participation of all.
The one area of my hobbies that does offer a non-verbal form of rapid communication is online chat, specifically through one of the games I play, City of Heroes. (Briefly, City of Heroes is a massively multi-player online (MMO) game where costumed, super-powered heroes and villains do battle in a comic book world.) While some players do have access to voice chat systems, and are thus able to communicate quickly, most players rely solely on the chat interface within the game to talk with one another. These conversations can be more tactical (game actions-related), in-character diaglogues (for those interested in role-playing their characters), or purely social among players.
The lack of adherence to traditional rules of writing can have those who make their living with the written word shudder in disgust (I used to be an editor for instruction manuals and technical documents). But the pace of conversation is what is most key to the situation both of you face. Everyone types slower than they speak, especially with those who never learned touch-typing, but most "mature" players are considerate of the time needed to get what you're trying to say onto the screen before running off with their end of the chat.
It's a completely different way of carrying on a conversation, but nearly everyone involved is on a level playing field, with the different exception being those with difficulty typing or using speech-to-text. Spoken conversation is the easiest and most comfortable way to exchange thoughts and feelings, and any other means of communicating will necessarily feel more limiting and inhibiting. But that interaction between ourselves and others is so crucial to our well-being that it must happen, regardless of the difficulties in doing so. My hopes for both of you (and so many others) finding greater ease in doing so.
My grandfather went through a medical crisis about five years ago that he is lucky to have survived, and even more lucky to have survived with his incredible intellect and wit intact. However, he has lost the ability to form clear words, and he now finds himself in a similar situation as both of you, Roger and Patrick, face. Thank goodness my grandmother is as wonderful as she is with him. I struggled with going to visit them at first because I knew my grandpa would say things and I wouldn't be able to understand him, no matter how hard I tried. I can read his writing just fine and am happy that he now writes on a notepad frequently, but it is still hard knowing how much he wants to say that will never get out. Funnily enough, he has also written a book about his incredible life, plus many stories that will not be published but which he sends to the family.
I'm not sure if reading this post will make it any easier for either me or my grandpa to accept the terrible misfortune of a brilliant mind that works faster than any mechanism to let it out, but this blog post meant a lot to me, and it is at least refreshing to know that we're not alone. Thank you all for continuing to write.
~Andrea
There are brilliant people all over the world who are capable of solving/mitigating this problem, if they know and care that it exists. With any luck this might get their attention.
I've been reading a blog for many years by the father of an amazing little girl who must use a computer speech device to communicate. She has never been able to speak beyond a few basic sounds. He has written a lot about the frustrations involved with this - in her interactions with other kids, at school, with other adults, and even just trying to communicate with her own parents. Here's some examples:
http://www.schuylersmonsterblog.com/2007/04/frustration-tableau.html
http://www.schuylersmonsterblog.com/2008/07/no-blue-fairy.html
http://www.schuylersmonsterblog.com/2009/02/muted-anxiety.html
http://www.schuylersmonsterblog.com/2009/03/ambush-my-heart.html
http://www.schuylersmonsterblog.com/search/label/big%20box%20of%20words
I'm hoping for something better for Schuyler, for Patrick, and for you.
I am continually impressed with your ability (and willingness) to express your thoughts and feelings, so personal, with such clarity. I do hope the blog, where conversations take place in paragraphs rather than in sentences (or fragments thereof) provides some compensation for the frustration of sitting on the sidelines when in person. Perhaps the ability to rewrite before "speaking" is helpful?
The link to Bowes is borked. (It’s just PatBowes.com.)
I strongly urge anyone with a speech impairment – including Roger and Pat – to learn about hearing carryover or HCO, available at no extra charge with your telephone relay service. You can call anyone you want and they can call you.
Dear Roger,
I came home for lunch and just read your blog. I feel like i've just been kicked in the stomach. I find myself thinking of all the things I take for granted every day, My ability to speak among them. You have touched my soul. I can't think of anything else to write. I leave that to proffesionals like you. I will kiss my four daughters tonight before I go to bed and never forget to say "I love you". Thanks for your blog!
The only solution is acceptance...Ebert
Joyfully.
Thank you both so much for sharing such a personal struggle with us.
So many things spring to mind. I finally understand why I've been terror stricken at the idea of learning a new language through immersion. I'm reminded of a character in one of the 'Ender' books who has a speech impediment and instantly connects to the first person who allows him to finish his sentences instead of interrupting to guess the last few words. I remember a friend in high school who could sign perfectly in order to communicate with his deaf father. I remember an old boss who learned sign language so she could communicate with her children faster (apparently children will learn how to sign before being able to speak).
Of course, nothing compares. All I can do is send a hug over the internet, and promise you both that while your ability to speak is gone, your ability to connect on a profound level through writing is nothing short of spectacular. Thank you.
Understood implicitly and perfectly and of course, incompletely.
Signed,
(black, republican, computer scientist, who lives at the beach)
Roger, you may not be able to speak in face to face situations, but your voice has never been stronger. Judging from the quality of Patrick's writing, his is a voice that should be heard as well. I hope he continues to blog and write and gets a book contract. I'd read anything he wrote.
I suspect, even when the technology is vastly improved, speech devices will never be able to grapple with nuance of tone and inflection that inform conversation. But as long as there as writers as clear and nuanced as you and Patrick, even the voices of the silent will be heard.
Just a suggestion for Patrick, I have been taking an excellent on-line course through a local community college. While my course involves on-line spoken lectures, it wouldn't need to -- or it could probably get away with voice simulation. The rest of the course involves a lot of interactive viewing of the professor's desktop (it's an HTML course) and interacting via message boards and online, realtime messaging. I could see Patrick teaching on-line University courses in this way.
Has Cereproc considered using an impersonator for some of the emphasized words you use? I've seen guys that can do perfect impressions of nearly every actor I name, I'm sure someone can do your voice.
Also, for business meetings, if you attend them via teleconference, relay services trained to interpret your meaning correctly are reasonably priced and sometimes free. If you know sign language, it's fairly seamless. I take calls from them on occasion.
Ebert: An impersonator is an idea...
I wonder if it would bother me as much.
I'm kinda selfish - and so I don't particularly have a desire to teach people . I can send a check easily enough to help people. I like my hobbies - books, watching films on DVD, comic books, music CDs, video games, hiking - all of which I do by myself. Never had a girlfriend - no kids.
When I have a fourday weekend from work - I might say a dozen words to people the whole time - and that only to the clerk at the store counter.
"Did you find everything you were looking for"
"yep"
A long time fantasy of mine is to be the Unobserved Observer - like a ghost.
So long as there is even an iota of life, one is witness, even if mute, to the glories of the theater of natural selection.
On the plus side, Roger, at least you've given us a topic that CAN'T be disingenuously drift-spun off onto tabloid Muslim fear-buttons or neurotic athie self-defenses... :)
I'm in a similar position myself, as my handicap is a muscular-dystrophy mobility where I can get around town nicely on a pair of canes, but never have my hands free for shopping. (And spend most of my household-errand trips back from the market strip with my goods loaded on my back like Fatima's camel.) However, I also tend to speak in a very low, quick mumble, and I've grown up since childhood honing the necessity of having to put my words facelessly on paper, where they can be ideally sharpened and corrected before going out. So I can partways sympathize in both directions.
My handicap is also only recent in the last ten years, and like our brief fascination with the Sgt. Ebert's Lonely-heart's Club Band* thread, I've also found it a unifying factor--For one thing, I've discovered the homeless no longer panhandle me for change, as I now seem to be one of Life's Fellow Victims, although that's not to say that I've had any new sudden reformation-of-Scrooge toward them...It's simply that I've now become the comfortable reminder that You Could Be Worse Off, and I'm friendly and easygoing enough with my average friends and passersby to pass it off and not hammer in imaginary guilt about it.
At the risk of cliche', it's like the scene in "World According to Garp", where it feels more comfortable to buy a fixer-upper house that a plane has already crashed into, than to buy a bright new one where you can spend your days worrying that one might: There is a community among the "Damaged" (a term we use with pride), that we feel we understand more of life in a positive way than those that have gotten the good things out of it--We face life without the darker, self-serving fears the ex-prom-queen has of losing her looks, the celebrity or politician has of losing his public status, or the rising corporate exec has of losing his power parking-space, as we have never had either. All we've had is the ability to express our thoughts and, under the right circumstances be recognized as human beings for them.
And anyone who's going to be grumpy, handwringing or defeatist about it, well, you're on your own for that one...No rule sanctioning that in the club charter.
----
* - No, seriously, I've got to side with the review-column responders and ask, WHAT the Sam J. Jones was with the cutesy self-conscious Beatles phase on the review site that nobody could quite tie in with the reviews?--Was it just to promote "Nowhere Boy", which seems to be kind of a waste of time, as the review consensus seems to be mediocre and forgettable?
Ebert: All of my review headlines yesterday quoted John Lennon lyrics. Seemed a good idea at the time.
"A related problem is that some people don't seem to keep conversations loaded in current memory": ouch! That is one of my pet peeves and I presently have the power of speech. I like that elegant phrase Roger, thanks for writing it. For now at least I'm pretty good at keeping conversations loaded. My friend and I always seem to have these interesting conversations while we are driving somewhere and the problem is that we arrive before we finish and are forced to move on. I always tell my friend let's bookmark this for later and then we can pick up the thread. And we do.
Thanks for sharing the letter from Patrick. You both write so very well, I can feel your frustrations so keenly from your words. There are some people who are willing to learn sign language just because. My one friend Bill became fascinated with sign language and learned quite a bit of it. Later he got a part time job at a k-mart in the electronics department. Occasionally he got to use his skills. One time a mother and son came in. The son, about six or seven, was reading his mother's lips as she talked and signed. Bill introduced himself to the boy in sign and the kid was shocked. The mom said "look he can sign and he can hear and talk! You really need to learn this!"
I always hated the foreign language requirement at college. I flunked French even though I had visited France twice and had quite a bit of French in grade school and high school. Some present day students must still feel the way I did. I've noticed that sign language is now being offered at many colleges to fulfill the foreign language requirement.
Roger, I can't help but mention in this discussion on communication how much I appreciate the headlines of your reviews this week. Not only do they fit the films, but they serve to give voice to a man who was silenced thirty years ago. Thank you for that, and for this wonderful forum.
On the reading and solving problems front, would it help if there was a sign language to voice converter instead of a text to voice one? I assume it is faster to make the symbols in sign language than to type. Being in mechanical engineering, I have an interest in such mechanisms. While it might not solve the various inflection problems and such, perhaps such an invention would help you communicate rapidly enough to keep pace with the conversation.
Just on a Python-fan tangent, regarding the Hungarian Phrasebook clip:
Can anyone explain that courtroom "Hah, got him!" joke that the audience and other actors seemed to pick up on?
I know the joke is supposed to be turning courtroom questioning into the standard immature "fakeout" (eg., in the tradition of "Spell 'hop'...Spell 'mop'...What do you do at a green light?"), but ran it back and seemed like Palin got all the questions correctly--What punchline flew past me when I wasn't paying attention??
(Would've asked earlier but didn't know the acceptable legal phrase.)
Silence may be as variously shaded as speech.
Edith Wharton
A very moving piece. It's probably a tiny solace, if any, but I've found some of your best work to come from your troubles. Thanks for the post.
Roger
I was leaving work the other day and you entered my mind. While walking to my car I realized I have been enjoying your tweets and posts (like this one) and I wanted you to know that while I was never a fan of yours in my teens, I have grown to appreciate and admire you, going as far as wishing you could podcast your perspective.
Then I realized. I missed your voice as well.
Love to you.
Roger, had you not been a witty and wonderful conversationalist--perhaps the minimal ways afforded you now for live face to face communication would suffice. I suspect something similar can be said of Patrick. Those who teach gifted students tend to be able to think on their feet and orchestrate some wonderful examples of divergent thinking.
Patrick, in time I hope that you are able to accept the new parameters of your social life and find peace. Glad you are here and thank you for sharing your story with us all. Roger is a kind and gentle ruler of Ebert Land on this blog.
Hugs to you Roger, and to Patrick too. I'm a speech pathologist, and it's always good for me and my colleagues to be reminded what's going through the minds of the people across the therapy table from us.
Just a quick thought - another user mentioned using a steno machine to increase your typing speed. Would a steno keyboard that was pressure sensitive be even better? Then you could add inflection or emphasis by changing how hard you hit the keys, like a pianist does when playing music. I would think that would be a much faster way to get that information into the text-to-speech software.
Of course, thank you for your brilliant and touching post, as always.
This is my personal experience dealing with the magic of communication.
My youngest daughter was born with a profound bilateral hearing impairment. In a family where voices bellow across rooms and my own deep love of music dictates the very nature of our lives, it was a shock and devestating to me at the time. Of course, time and perspective make me realize that it was not the worst diagnosis a child could have, but in the wake of a difficult time, when emotions are running high to start with, realizing that there is something wrong with your child is devastating.
She does have some hearing at conversational levels, where she lacks hearing is at high frequencies, so she is able to recognize sounds and words without the use of her hearing aids. But we still use ASL. Vocal sounds like "S" and "F" are lost on her, even with her aids, particularly in loud places or outdoors, where incidental noises can prove distracting. She also goes to a city school that is specifically structured around the DAHH community. It's not a DAHH school, it is a public school, and the entire school learns ASL, both at the elementary/primary levels and the high school/secondary levels. The DAHH kids in this school stay at the school for their entire scholastic careers, a central location for a rich and vibrant community.
It is incredibly difficult as an adult to learn ASL- my children all have picked it up quite quickly. I have a rudimentary knowledge of it, but I still have trouble trying to remember some basic signs. Languages are always easier to learn when the brain is still developing as a child. I keep plugging away, as difficult as it is, because I know this is her world.
But that is ultimately the point. It's her world, I'm merely a visitor in it. I'm never going to fully understand her life and how difficult it is. But I meet the loveliest people now, all DAHH, who see her FM mic hanging around my neck in malls. They are enormously patient with me as I try and converse with them. There is a lot of finger spelling. But I am always enthralled when they converse with her- their faces light up as she answers them in a language they share and understand.
There is a movement to try and maintain vocalization as the foremost of communication with the DAHH. There is a local school that favours it to the whole language system my daughter is taught. There are parts of the world that try and deny the fact ASL is a complex and rich language with its own grammar rules and syntax. It's poetic what my daughter does with her hands, face, and body in order to communicate. I don't want to deny her that right. So any opportunity to use ASL and learn ASL is treasured by me. It's my job as her parent to meet her needs, after all, not try and get her to meet mine.
I am frustrated because the ease of speech is taken for granted by us all, and when faced with communicating with someone who doesn't have that gift, we tend to grow impatient as we attempt to figure out how to cope in a situation. It's human nature, I guess. It's a shame, Roger, that you have taken to being an observer when you have one of the sharpest minds around. I know if I were to ever to run into you, I'd be able to see the eyes sparkle with wit, and that says a ton to me.
Do people really just let you sit there? By yourself?
Seriously??
My god, if I ever had the good fortune to see you at a party, I'd be making a beeline for you with a pen and a notebook.
Those students on campus trying out blindness for a day? Yeah I did that too. I took a class where for a week, we had to "try on" various disabilities. I think I spent two days in a wheelchair, one blind, one deaf and one mute. Blind was the toughest - it's amazing how overwhelming a noisy school can feel, talk about sensory overload. Being mute was the hardest to stick to and not cheat, but I never felt the despair of knowing I'd never talk again. It was quite simply just annoying. If I got anything out of that, I got 1/1000000 of the frustration you feel being unable to jump into a conversation. Or maybe less. The wheelchair and being deaf were also simply annoying, I knew it wasn't permanent, and so I felt no despair.
There is however, a use to activities like what I just described. It's not to put yourself in the shoes of someone with a disability; that's impossible, as the worst part of them is the permanentness. But it does make you realize, even if just a bit, that people without speech or sight or movement are still people, no slower mentally than those who happen to still possess the ability to talk, see and move. I covered a wheelchair basketball game last Friday. Some kids were paraplegic, some were missing limbs and some had other disorders. I saw normal kids though, playing a game they loved. That class, where we had to put up with people getting annoyed at us because we couldn't keep up for a week, probably helped me see it that way. Oh and not stare. I'm very curious by nature, but thankfully I've discovered the difference between curiosity and staring like someone's a freak in a circus.
I'm glad you've been able to accept that your voice is gone for good. That sounds harsh, and I wince as I type it, but it's true. I wish both you and Patrick the best of luck.
Oh Roger - such honesty. Wonderful and though some would label this post as a sad story. I do not. You make the choice to just get on with it (life) and do the the best you can. Love that.
We take our ability to talk for granted. This ability of simple communication is a gift, and we often squander it, not using the "voice" we are given. But you Ebert, you still have your "voice" even though your actual voice is gone. And still your voice remains strong and resolute.
I've commented on how the way you handled your illness is inspirational to say the least, but there's something about this piece that convinces me you're an intellect in every single way.
"The conversations of some people seem to drift in an eternal present."
It is so interesting to read anecdotes about your experiences in dinner tables and parties. You probably know more about the art of conversation than anyone here for you went from participant to strictly observer.
There's no way for me to imagine how it must feel not to talk for days, weeks, months- my God years. I just can't wrap my head around it. My imagination can't expand to such horizons but I do know that you must know so much more than the average human. Like a man behind a microscope scrutinizing the creatures that swarm within a leaf or a piece of bread, I'm sure you learned a lot and more importantly noticed a lot about human nature. Examining a simple gesture, the flow of conversations, the timeliness of words and so on.
I wish I could read more about all this. It interests me so very much.
I am unable to adequately express my feelings about the difficulties you and Patrick face in life. The situation is simply stunning, and beyond my words, except to say that I am glad you and he are persevering.
Roger, I admire the fact that you have taken your former verbal abilities and have used it to become such a prolific writer. I have watched you for years as a movie critic, but now you offer so much more. I know how much you love London, rice cookers, and Chaz. I enjoy your political commentary (because I usually agree). And although I can not match your writing skills, I look forward to commenting on your articles. It’s almost like a conversation. I am glad that you have attained a measure of peace and acceptance. I wish that you could have reached this point without the suffering. But I just wanted you to know that your fans are grateful that you push on.
Nobody can know what it's like for you. And I would think it would make things extra hard when you get advice on what to do or how to cope. It's your deal, and you get to handle it any way you want, without advice from others, even when it is well-meaning advice.
Another eloquent essay...
Funny coincidence, Patrick Bowes is from one of my family hometowns. Anyone there named Clouse, or a few other german-sounding names is likely a relative of mine. We'd visit our great aunt there, a nun named Sister Carmelita, who left the Catholic church at age 80, after 60 years.
There's a musical gizmo, a pitch shifter, that's adjustable to raise and lower the pitch of a word up or down by an octave. Ordinary speech varies in little steps, just a note or two, rarely as much as a fourth or fifth. A thumb- wheel, with a little practice, might alleviate the necessity to use recordings of a mimic. It could also lengthen or shorten the pronounciation of a word, "on the fly."
Thank you for sharing your struggles.
Sign language is cool, but I agree with you, not a lot of people understand it and it's not so easy to be understood through an ASL interpreter. It can work between two people that know sign language; however, between you, an ASL interpreter, and another person, it can be significantly awkward. There are not a lot of translators that can do voice well.
I am an hearing impaired person with an inability to say some words and have a thick deaf accent. I rarely speak in public and now I'm thinking I should get over it and use my voice more. If somebody can't understand me, screw it, I'll keep talking until somebody can. Thanks for the clarity.
I am deaf, with the ability to communicate orally (never learned to sign until about three years go). Still I have many of the same communication issues you do -- though it's flipped -- I am the one forced to try and keep up with the flow around me, and I can't interrupt (too often) to have things repeated. I've seriously at different times considered giving up on speech altogether and just using ASL.
In any case, like the previous commenter about ASL, that seems like a possibility -- have an ASL interpreter voice your signing, if you know enough signing. I picked up enough in two or three years to be able to communicate, and that was without regular practice or use.
I don't know. I understand your frustration, and you're exactly right: in the larger scale of things there's nothing that can be done about being unable to speak (or to hear).
As others have said, while I've always known who you were all my life, I never paid much attention (I never watched movies until they became widely available in DVD format WITH SUBTITLES) because I didn't really watch movies. But now that you are online, I follow what you have to say (though still not as much about movies, heh) far more.
Life is weird like that, I guess.
Thank you for this article. I have Asperger's Syndrome. I can relate very much with the difficulties you have with communicating with others. The waiting for others to comprehend what sounds very clear to me in my head. The frustration is completely insane. With Asperger's I kind of have the polar opposite problem to you. I talk too fast and too loud for people to be able to follow.
My father had a form of Parkinson's called Progressive Supra-Nuclear Palsy. He could not speak at all for the last two or three years. Well, he could, but it would come out very mumbled and it would take the listener a great deal of patience to understand. He and I spent the last year or two of his life together more or less, alone, forgotten by the rest of the family and the world. That's what it felt like anyway.
This is a beautiful blog post, Roger. And thank you Patrick. I cannot say that all your problems will be solved, but as Matt Damon's character in Invictus once said: Nobody is ever completely at 100%. The best I can offer you is to tell you that neither of you will ever be forgotten by me.
Erik B. Anderson
PS - here's a tribute I made to my dad:
http://www.youtube.com/watch?v=YmCkhHmQxno
Ebert: There's a lot of love in that video.
BTW to the person who commented on increased incidence of depression among deaf folks -- a lot of that is due to the fact that hearing people have systematically destroyed most of our communication avenues in the misguided attempts to force us to learn how to speak and "listen" whether it is within our capability to actually do so. By the time it is understood that a particular deaf individual has gone as far as he or she actually can, they are then playing catchup for the rest of their education and often their life -- having not been taught ASL early enough, not having quality education available IN ASL, and so on -- all of these factors add up rapidly to profoundly isolate deaf people not just from hearing society but also from deaf society. Things to think about.
Travis McClain wrote:
" I've personally seen people mocked, insulted and deliberately put in situations contrary to their known limitations just to prove a point, and I suspect I'm not alone in having to stomach such behavior on occasion. "
I've personally known one person who died because someone else wanted to prove the point that their medical condition was made up for attention. (I myself came close to death after a similar incident.) This is damnably common, and I'm firmly convinced that people like this are secretly resentful that the universe doesn't revolve around them 24/7/365 and therefore lash out at anyone whose real challenges might hog the spotlight for even a few seconds.
I wish I could write as well as you, Roger.
Roger, and Patrick.....
I can only imagine what you both have gone through.. and yes, acceptance is a healthy attitude to take. I am glad you both are reaching out through your writing and blogging. However, please don't accept the fact that you will never be able to communicate effectively in an interpersonal manner. Computer technology gets better and better every single year. Many of us are good listeners; we can slow ourselves down, just a tad, in order to completely and properly ingest what you have on your mind, be it written on an ipad, computer voiced or even just gestured.
Roger, I didn't have any idea that your speech was lost until I happened to see you on Oprah a while back. I watched as you described your childhood memories of root beer, as "Alex" spoke for you from your Macbook, and as you gestured the emotive part of every word. And I thought, "that's how to do it..be an active part of the delivery of the words to add the inflection"! You communicated your thoughts and feelings wonderfully that day. I hope you do this regularly.
I guess what I'm trying to tell both of you is to not give up on conversing with people on a real time, one to one basis. Yes, it won't ever be the same, and it will always be problematic in larger groups, but experiment with everything you can to make it work for you. And don't give up on us.... we can and will adapt to you, too.
I am not a good writer, so I hope you understand what I'm trying to convey to you.
I wish you both health, happiness, and many fantastically advanced computer speech programs for you to make use of.
"As for a voice, I was around for the Siskel and Ebert days, and ironically it is now that I hear you LOUDER than when you spoke".
I agree with that. I remember Mr. Ebert's voice from the old TV show and I can hear it when I read his reviews. You can hear Barrack Obama's voice in The Audacity of Hope. They say you can hear George Bush Jr's voice in his new autobiography.
What a poignant and beautifully written email from Patrick. Writing is certainly something he should pursue with vigor. Thank goodness for the internet and it's virtual voicebox. Everyone needs to be heard. Indeed, to be deprived of the spontaneity of lively conversation where ideas bubble and bounce from one place to another like a bead of water on a hot skillet would be a kind of torture at first. But then there is the joy of writing, of crafting a thought, sculpting an idea from so much clay.
I'm not a programmer, but it's always seemed to me that the easiest solution to adding stress and inflection to text-to-speech would be to tie it to how hard you tap the keys. When I blog and want to stress a word or phrase, I capitalize or italicize, but what my muscles want to do is just hit the keys a lot harder. I know computers can sense differences in key-tap hardness, because I had to adjust the settings once on a stupid Mac keyboard that thought I wanted to double-press every key I pressed.
So why not tie this ability into text-to-speech rendering software? It would work something like this: you'd be typing along and you'd want to emphasize THIS word or THAT word, so you'd hit the keys extra hard for those words. They'd render in larger font on your screen, and when you pressed send, they'd play at a louder volume. It would take some time to learn the precise key pressure that created the various levels of loudness, but I don't see that as a particular hardship since the whole system presumably has a steep learning curve anyway.
Presumably, you could do something similar with pregnant pauses, by creating a mode in your text-to-speech software that measures the amount of time between pressing the spacebar and pressing the next non-spacebar key. You'd have to train yourself to match the pregnant pauses in your internal head-voice with corresponding pauses in your typing; for this reason, it would probably be best to make this an optional mode that you'd only use in meetings and such, because it could be very tiring otherwise.
Again, I'm not a programmer, and I don't know how to do any of these things, but it strikes me that they wouldn't be all that difficult to mod onto existing text-to-speech software, because they use already-existing processes in the computer (time measurement, key-sensitivity measurement) to create these effects.
Ebert: There are various software solutions to word emphasis, but none are really mature. If you have a Mac, use the Alex voice to read a paragraph, and you'll hear, I think, the best inflections so far. Try it with an exclamation point and a question mark.
A few months ago, the actor who voiced Alex actually turned up on one of these threads!
I realize that this might sound like the equivalent of comparing a papercut to a knife wound, but while I am able to speak I am often very shy in public and have a great deal of trouble forming sentences when I am speaking. I also have difficulty controlling my voice and tend to find myself struggling to speak loud enough; I mumble a great deal and stutter at times. I also have a major tendency to go blank and have difficulty coming up with things to say in a verbal conversation, as opposed to an instant message or something in writing; I "umm" a lot. It might seem like something that should be easy for the average person to control, and I'm certain that Roger and Patrick would gladly take my "problems" in exchange for theirs, but speaking in a clear manner for me (particularly around strangers) is about as easy as walking a tightrope. I think that my memory is also a problem, I always find myself a few hours later wishing that I had raised a certain point but having been unable to remember the point in the midst of a discussion.
I do have a feeling of isolation and while I know that it does not compare to Roger and Patrick's troubles I was able to relate to much of what they were saying. I am often enraged at myself for not having expressed a certain point or not having been able to communicate an idea to a room of people, wishing that there was a way to break through. In the past I even considered taking up drinking as a way of being less shy, which I thankfully never did.
I realize that my problems are trivial by comparison but as someone far wiser than I am do you have any advice Roger? How would you handle it?
Ebert: Drinking could lead to more problems. But you know that. No, I don't have any advice. But somebody else here will. I'll bet.
Two thoughts as I read this eloquent post:
1. It's making me think about how much we waste with words. I read this before I went to an early Christmas dinner with my side of the family. It helped me focus on communicating wisely in that short time we had together. And on listening, too.
2. It reminded me of the two opportunities that I had to meet you at EbertFest 2010.
First, at the Ebert Club breakfast. As I watched you come in to the room and work your way around to shake each of our hands. You came up to me with what I perceived as a smile in your eyes, shaking your finger kindly at me - which I interpreted as "I know you" or "There you are". Did I perceive rightly? We had a pleasant conversation over a handshake greeting without you having said anything.
Later, you settled in on the couch with everyone around you, talking. I see by Ali Arikan's Facebook posting this week of a picture of that moment that they were discussing a wide range of movie issues. That must have been one of those moments you describe in this post as just letting the conversation happen around you.
Shortly after that, I spoke briefly with Chaz at the coffee bar. I asked her one question: "Do I ever get Roger agitated with my comments? Because I don't mean to". She looked at my name tag and said "Randy. Hmm. Oh, you must be that brave conservative on the blog. Oh, you have to meet Roger." She took my hand warmly and walked me over to you at the couch. You patted the seat next to me and someone took a picture of me with Omar Moore's camera. A picture that I treasure from that week. Again, no verbal communication that I remember. But, a moment.
Second moment was at the FFC panel, which I attended with my friend Dave Van Dyke and his lovely wife Dawn. After the panel I brought Dave over to meet you. You wrote on your pad "You two are here together?" Then you put our hands in a handshake with yours on top for that picture of us three that is posted elsewhere on your pages this week. I recognize that now as one of your moments where you are pleased to be one degree of separation for two people meeting through your blog.
A lot of communication in those two moments, with not much said or written. What a week that was.
Ebert: Randy, that you stay here slugging it out week after week earns my respect. So we disagree? So what? You are sincere and good-hearted. Yes, you interpreted me rightly. Yes, it gave me great delight to join hands with you and Dave. Yes, I greatly enjoyed the conversation. Ebertfest was a tremendous pleasure, and the Meet & Greet very special.
In fact, here's another idea: since there may be a software solution, you could sponsor a contest, with a cash prize for the programmer who can produce the best freeware solution and make your software easiest to use. A condition of the contest could be that all submissions would have to be made freely available on the Web, along with their source code, for other programmers to tweak and work with.
One person may not have your solution, but maybe a whole gaggle of programmers might.
Ebert: I imagine the tangible rewards for for a text-to-speech breakthrough would be far greater than a contest could offer. Smart people have been working on it for years.
Man, I can give you some soapy warm and fuzzy message to make you feel happy, like the fact that in the past year *and* the past 30 years you've given more air to these simple, small lungs than you might ever realize. And it would all be sincere. But, I don't think that's what you want to hear right now. Suffice it to say, though, that we six foot tall little people appreciate your voices (plural).
Rather, I would think that what you want to hear is simple: We have to play the cards we're dealt with. But, I don't think that's it either. That's too objective, and we often hide from ourselves behind allegedly rational objective analysis.
Not realizing the direction you were taking this piece, so much reminded me of something that many of the minorities in this conversation understand completely.
Someone can try being [Insert Minority Group] for a day, but that is not the same as living it, without choice. It recalls "Black Like Me."
You have also experienced the abrasive polite Gaze that so many of us have so frequently experienced in such moments of conversation. Chances are that you have also experienced the Stare, from others not involved in your immediate conversations. And, you have experienced invisibility. If you haven't yet experienced it, you will also experience being a novelty.
If you haven't already, you will also experience being helped in situations that you do not need help in. Reminds me of the need many people have to speak really loudly to blind people. You might also find yourself experiencing sympathy when what you want is normalcy.
But, we might also find ourselves reading things into people's expressions and gestures, reading things that are not there. For, what we read is actually our own projection, which indeed may be mostly accurate, but might even once be inaccurate.
In any case, I'm welcoming you to the club of minorities. Not claiming even for a second to understand your plight. Not claiming for a second that your plight is anything but difficult, maddening, or a nuisance. Not claiming for a second that you want to be a member. In a way, as a Midwestern Catholic, you were already part of the club anyways.
But, what I am saying: when you're ready to do it, relish in it. I hate the cultural idea of "minority" because it implies abnormality (and made all the more bizarre when we consider that "normal" is some Barbie Doll variation on "WASP Alpha Male"). When I fly, I love whipping out the Bible and reading it. Even though I'm indeed reading it to study, it just confuses everybody. I'm really tempted to go buy Barry Manilow's Christmas album, but I don't think anyone would get joke except me (and usually, I'm my whole audience, so it's all good).
The other option is to ask myself how does it feel to be a problem.
Hitchens responds to life's absurdities with a mixture of brutal honesty, imperial hypocrisy, and delicious jackassery. You have to find your response, and that response has to be entirely thoroughly *you.*
When you're in the mood for it (and you know the love and respect I'm saying this with): don't use Alex's voice. Use Alexa.
Be well, man. I appreciate your voices. All of them.
Omer M
Ebert: I just tried out Chiara, but she speaks Italian.
Are you still able to laugh?
Ebert: No, dammit.
Roger and Patrick and J.
I, like all the commentators here, would help, if I could. There is nothing more frustrating than feeling you should be able to do something and cannot. Perhaps the frustration I feel at not being able to help someone in need affords me a dim glimpse into your world.
Your patience and fortitude and continued sanity are inspiring.
Thank you for continuing to communicate with us, using the expositional gifts of a blog and the interjectional format of tweeting. I can't add any more to the conversation, other than being milldly nearsighted. When I don't have my glasses or both contacts in, I become incredibly introverted and live with my own company. Just that little sensory deprivation makes a difference in how I want to relate.
I appreciate your writing, the last 2 years moreso than the 16 when I first read your reviews through CompuServe. Thank you for reaching out to each one of us.
Thanks for this.
I cannot imagine the frustration nor the resignation to adopt to that.
I wanted to comment on lip flap. And on voice.
Conversation to me is like music (I am a non-musician). Lip flap is a necessary art, a feeling out, the first notes of a conversation.
It can be caught or represented in actual music. Remember The Music Man? That cheep-a-little-talk-a-little song in a parody of the gossip of women? High pitched, arrogant, holier-than-thou.
The conversation of men is different. It has different notes. The first signal for conversation can be almost grunt-like.
"Snow."
"Yup."
"Lots."
"Yup."
"Trucking?"
"Yup. You?"
"Yup."
That's a conversation. It's a tuba. Two tubas.
But it rolls. Conversation does. I get it when you say you can't interject in it. When the symphony plays you have to hit the cymbal just at the right time, crown the pitter-patter with just the right notes when you think of them that will spark the resulting laughter and understanding. There is applause in it, not just music.
There is a time when a conversation can be turned, and if you miss it you can't do it.
Someone shy cannot do it. Someone who stutters cannot do it. Someone unsure cannot do it. Someone intimidated cannot do it. Someone without a voice cannot do it. As much as I can, I get it. Of course I will never get it absolutely. Your describing the fellow with the blindfold saying he is trying to understand what its like to be blind is apt.
I had an uncle when I was very young, six, seven. Uncle Wilbur. He was deaf and dumb. We used to talk on paper. Back and forth. It was at my grandparents farm and we didn't have a lot of paper. We filled every corner of used envelopes, inside and out, opened Grandpa's empty packs of Sportsman cigarettes to write on the white paper within. I noticed even then there was a rhythm to our "talking" back and forth. There has to be rhythm in conversation.
The reason I'm writing this is I believe this. Strongly. A voice is all we have. It doesn't matter what that voice is. For some it is art, painting, sculpting, expressing a world out of their understanding. For others, photography, having "an eye" that others do not have. That's their "voice".
I remember a Turner Classic Movies introduction, you know, those one or two minute items describing an actor. This one was Paul Newman talking about Elizabeth Taylor.
"She knew her instrument," he said at one point.
That was her voice. Not just the way she delivered lines. Actors use their body as an instrument. Plus their voice. It's the way they move, hold their face, deliver their lines. It is all their "voice".
Politicians, too. Kennedy challenged and inspired. Johnson consoled. Nixon spoke with authority, later sounded wounded. It was all in the tone.
I get what you mean as much as I am able, because I recognize it is not enough in conversation to get the word in edgewise. The word has to have the tone, too. You have to have the tone in edgewise to be a part of that symphony. Simple examples: A thank you from a dear aunt who has received a gift from you (that thank you translation: "You are so precious.") sounds different than a thank you from a store clerk (that thank you translation: "Move along. Next.") It's all in the tone.
In conversation meaning is conveyed not just with the word. With the right tone it has means something. That is real conversation. Meaning. Something conveyed that has meaning, can affect someone else, make them consider, think, pause, reflect, impact them emotionally. Carrying a conversation is not just words exchanged. It's meaning exchanged. That's why poetry touches us. It's not just the words. It's what it means.
That feeling that a voice is all we have, that it is the most important thing, was cemented when I interviewed an Auschwitz survivor in college. I drove through a long winter road to find her. It's too long a story to tell. But I drove away, hours later, not changed, I won't go that far, but absolutely certain that a voice was the most important thing anyone has. That she had to tell that story, use her voice to tell it, because so many voices were silenced. Having a voice is sometimes a responsibility. I'll put her name here. Eva Brewster. Her book was Vanished in Darkness.
Acceptance comes at the end of crisis. After denial, anger, bargaining, ect., you know the drill. You're there. The most hard hitting line in your piece above is at the very end: "The only solution is acceptance." That's hard hitting. That's the blow to the stomach. Only a real writer can do that. That's a symphony. It all has poignancy, sadness, passion and guts. It's not just the words. It's the meaning. You have expressed a tone in all this, in this stated acceptance you'll never speak again.
But look at all these replies, Roger. There is wonder in this. There is a blessed wonder in it. A person who cannot speak has a voice that can be heard around the world and move hearts in all parts of it. My God, Roger. That's your miracle. That is your voice.
Roger,
You continue to inspire us all with your courage and presence here...and as a tremendous fan of Dr. Winston O' Boogie (aka John Lennon), your lyrical quotes above your most recent reviews put a smile on my face (especially from "Look At Me" ("Who am I supposed to be?") taken from what I still think is John's best album (John Lennon/Plastic Ono Band).
Speaking of music, why not write a blog entry on your favorite soundtracks or how the power of composers like Max Steiner or Bernard Hermann enhance already great films...
Large gatherings are for the shallow, anyway.
Only a few creative ideas occur to me. One involves using musical cues. When you want to say something, chime in with a musical chord that announces to everyone that you are about to speak. "Yes, Roger?" Then type the message out and have someone next to you read it aloud as you type. (Use bold face, italics, or underlining for emphasis.) It grabs attention quickly and delivers the message quicker than text-to-speech would, plus it's easier to understand the speech. My suggestion may be less than useless, but it might have some value.
Thanks Roger and Patrick for sharing this! This post--as well as several great comments about stuttering, signing, and plain and simple shyness--gets my mind abuzz thinking about ways that I can be a better ally to people who communicate in non-verbal ways.
Every year I go to a peer counseling workshop that, for the past few years, has been conducted entirely in translation for non-English speaking attendees from outside the US. This means that everything that is said publicly at the workshop (from longer lectures to announcements about what’s for dinner) is said in two languages.
This has meant that the workshop goes slower than it did in previous years. Everyone has feelings about that. Luckily, since it’s a counseling workshop, there’s space for us all to work on those feelings and move on. The main purpose of the workshop does not have to do with language, but now because of the bilingual aspect, we’re all getting a chance to really think about all kinds of issues related to language. Many of these issues are ones readers have mentioned in the comments above like anxiety about keeping the rhythm of the conversation going. Remember Uma’s famous line in Pulp Fiction about uncomfortable silences? The workshop and this post have been good for me to think about language inclusion. I think talking about this helps all of us be better prepared to help things go well next time we have the opportunity to have a non-verbal or partially-verbal conversation with someone.
I like that we’re naming Lip Flap, too! How much time is spent in conversations (I think of faculty meetings) posturing, throwing one’s weight around, and using fancy speech to cover one’s nervousness or insecurity? In an activist group I belong to, we’ve done a pretty good job of stopping that tendency in its tracks at meetings by keeping a speakers list: No one speaks twice till everyone gets a chance to speak once; we try to stay mindful of not hogging the floor (if we go on and on, we are gently reminded to “wrap it up”); and if someone interrupts a speaker, they are reminded to wait their turn. This works well for activist meetings; less well for a dinner party or similar, but perhaps there’s something to glean here that will help all of us move forward in supporting one another in the wild, wonderful, and sometimes treacherous art of conversation.
It seems from the post and comments that a good start for us allies is to keep a relaxed, patient attitude when communicating and not interrupt. Maybe saying something as simple as, “Let’s get back to what so-and-so was saying,” could help with those moments when the conversation rushes past. This might also be applied to a conversation with someone who’s learning English. Something else this post makes me consider is that I may just have to deal with and get over my own nervousness about a conversation being slower, more full of pauses, and needing to ask for clarification. Not such a big deal, really!
What else would non-verbal speakers ask of their verbal-speaking allies?
With love,
Jennifer
It seems I broke every rule of common sense while communicating with you Roger: I never had my reading glasses with me (something my wife always tells me to make sure but I never do unless I'm going to use them extesnively), I pulled your notes within an inch of my eyes, every single time, Oh man.
Let's face it though, during my life I've listened to your great communicating skills (talking or writing) for very extensive periods of time. Additionally, I enjoyed our times together enormously.In other words, I'm more than OK if you are OK.
Start fantasizing about learning the fuck out of ASL. Then learn the fuck out of ASL. Then hire an intern looking for the experience, connections, exposure to the world of Ebert who also is expert in ASL. They work for free, part time, attend meetings, interviews, anything else and interpret your signing. Voila. Forgive me, and I am not in your shoes, but many deaf people are, and it seems like a non-issue.
Godspeed,
Scott
Patrick, Roger, Have a blessed holiday. Your candid stories are much appreciated.
I am recalibrating my perceptions today.
Roger,
This is Pat Bowes. Thank you for your wonderful journal. You nailed it, Roger! Every experience you mentioned so eloquently has been a shared experience. I’d also like to take this opportunity to thank your many readers who shared caring thoughts, issues of their own, and suggestions that may help. I value and appreciate every kind word and suggestion for I do not claim to have the answers and though many of the suggestions have been tried there is no harm in revisiting an idea. For those who have had trouble accessing my site, I am not sure why that happened, but here is the address in case you wish to follow my journey through the hell that is cancer: http://www.patbowes.com It’s all lower case but I doubt that matters.
Yesterday, Friday, December 10, 2010, was the one year anniversary of having my tongue removed. It’s been a tough year, but it has also been a glorious year because of all the kindness and support I have received from my family and a few close friends. My journey has been one where first 5% of my tongue was removed, then another 20%, then 80%, and then finally the entire tongue. With each passing bout with this aggressive form of cancer came more and more surgery, accompanied by less and less ability to talk in a coherent manner, as well as now the complete inability to eat or drink. I take all nutrition and medicine through a feeding tube and I have said along the way that all I really want, more than speech, more than my beloved golf, is a simple drink of water. Your guests write passionately about understanding that we should take even the simplest act for granted and how right they are. A simple drink of water, dinner with friends, a pleasant conversation, to lay on my stomach without the discomfort of a feeding tube, simply to be understood. I found solace and comfort in many of the comments of your guests and it was nice of them to take the time to write, to share, to care.
Roger, you point out accurately, too, that other areas of the body have been attacked along the journey. In my case, my left arm, left thigh, back, and chest have all had muscles and tissue removed to create the “flap” that replaced my tongue or graft from one area to the other. My jaw was broken in two and my neck was cut extensively in an effort to check lymph nodes and to simply get into the area of my mouth where the surgeons needed to get in order to remove my tongue. My lower teeth were all removed and my upper teeth have moved around quite a bit ruining my smile. With each passing surgery I kept asking, “Will I be able to play golf?” I love the game and my good friend at a nearby course lets me play on a practice area where, yes, I can still hit the ball, though I’ve lost lots of distance, and too often blood drips from my mouth while I am putting. So, now in the winter I practice putting in my living room because we short hitters have to be superior putters. Here’s the deal – accept, you bet, I agree, but I don’t care how many surgeries I have and I don’t care what they do to me, I am going to pursue my goals in golf and in life.
At times I feel guilty even talking, well writing, about this because there are many people with much worse conditions and I pray for them. We all have a cross to carry in life and at times our cross gets heavy and we need a Simon to help us as we climb the mountains of life. It’s obvious, Roger, that you have been a Simon to many people through your writing and your life. I’ve always been an independent cuss, living on my own, doing my thing, pretending to be strong enough to make it alone. It’s just not possible. That model went flying out the window long before December 10, 2009 and there is something rather liberating about not only needing, but accepting help. On March 30, 2009, the day I had 80% of my tongue removed, I awoke in the hospital with the most amazing peaceful feeling. I called it “perfect peace” because something happened inside me, I was exposed, I was free. I communicated with a white board and marker, as well as some index cards with various messages my brother, Tom, had made for me. Within a week I got a new trach put in that allowed me to talk. I remember waiting for my dad, sister, and brother to arrive for a visit before I said anything and then I breathed, “I love you.” Tears flowed freely and I pumped my fist in the air – I could talk! I could talk, for 8 more months.
Was it a temporary reprieve from the Lord? Maybe. Maybe it was an 8-month gift for which I am eternally thankful.
Perhaps the biggest problem your readers may want to understand about the use of various devices and methods of communication is that all such devices are nice and words can certainly be written or spoken. Those devices can speak what I write but they cannot express how I want to say it, and therein lies the problem. A monotone, mechanical voice that does not always fully understand how to pronounce the nuances of the English language and cannot add expression is inherently limited in its performance. There is no doubt that some highly intelligent group of people will someday solve that problem, but they can never solve the larger issue, which is the manner in which human conversation occurs. In the meetings that we have both attended where we want to say something, we want to share our ideas, the frustrating part is the fact that the conversation stops and the flow of a meeting is disrupted. In the world of radio it’s what is known as dead air or dead space. Listeners will turn the channel if music or chatter isn’t virtually constant. As a teacher, and I am proud to still consider myself a teacher, a “dangle” in a classroom is a moment when there is a pause in the action. Tech issues, lack of teacher preparedness, disruptions over the loud speaker, etc are all conversation disruptors and we humans tend to move on to something else when those pauses occur. In a classroom of students of any age it is the dangle that brings about misbehavior. In meetings when people wait even one minute or less for me to write something, the moment, as you so aptly described, is lost. I have deleted and erased more comments than I have made because by the time I write or type out my remarks the conversation has moved on. It’s also tough being “on stage” typing away while the other folks in the room are waiting and then soon chatting about something else. It’s also very difficult to have very well-intentioned friends read what I write because they have yet to fully grasp what it is I am trying to say. Most of that is my fault for perhaps not expressing myself properly, but trying to type quickly and stay in the moment is a challenge so I take shortcuts that in the end do not pay dividends. I feel like a burden in meetings when it wasn’t so long ago I was a very active participant.
Well, I am going on too long here, but I will be writing on my website more about your journal, Roger, and the thoughts you and your guests have inspired. Please know how grateful I am to you for your understanding, your shared experience, and your ability to express what we feel. When I wrote to you I was down and wrote that note rather hurriedly never expecting anything to come of it. I was touched that you wanted to share it and of course agreed to your kindness. I am thankful for my job and the opportunity to continue to contribute. I just need to figure out how best to do that. Your insight is incredible. Yes, Roger, you nailed it!
You are right that acceptance is critical to our success and I am sure you agree that acceptance and capitulation are not synonymous. Thank you, Roger, thank you.
Pat Bowes www.patbowes.com
Ebert: Pat, thank you. Readers have responded so strongly to your words.
A simple drink of water. Yes. Or, in my case root beer:
http://j.mp/5orFeo
I didn't understand the extent of your surgical intervention. Yes, in trying to patch up one part they leave the rest of you looking like the doorman at the Texas Chainsaw Museum.
If you can walk without difficulty, walking is a great comfort and an aid to serenity. I find it's good to take along a cel phone to text for help if necessary. hinking of walking as golf without the equipment :)
You
Write
Often
About
Loosing
Your
Voice
Not
So
Much
To
Mourn
It
But
To
Describe
The
Unique
Shift
Of
Insight
Trapped
In
Silent
Thoughts
That
Made
Your
Life
Experience
Emerge
Bizarrely
Refreshed
Since
I've
Never
Met
You
Or
Gone
Without
Speech
My
Fascination
Is
Empathetic
With the blind
Deaf
Anyone
Who
Lacks
Full
Sensation
I'd
Like
To
Ask
You
When
You
Hug
Your
Wife
Is
The love
Felt
Stronger
Though
Impaired
Restrained
To
Wholly
Express
That
Love
With
Every
God
Given
Outlet?
In turn
Would
The
Build
Up
Of
Such
Passion
Make
Your
Kisses
Also
Feel
Bizarrely
Refreshing?
If
So
I
Bet
That
Extra
Effort
Isn't
A
Loss
At
All
What you both posted is so heartfelt and so painful. I am so sorry. I can't imagine not being able to speak. When I studied abroad, I got good enough in another language to communicate, but the hardest part for me was that I didn't have humor in another language -- the inflections, gestures, and references were all culturally different, and I found I was not myself in another language because I rely so heavily on humor in relating to others. To not be able to laugh or use verbal humor anymore -- puns, wordplay -- would make me question who I was. I am grateful to you and to Patrick for reminding those of us who can speak what a gift we have, and I will do my best not to waste it. I only wish you guys could speak again someday.
Thank you for your powerful commentary. I am an adjunct professor and speech language pathologist. My expertise includes working with users of augmentative and alternative communication (AAC) devices. As you are well aware, these are the computers that "talk" for people. My research has shown the slow rate of speech; 12 words/ minute on average compared to 110 words per minute in verbal conversation. I "recorded" a conversation that a young male survivor with head injury had with a care provider. His rate of communication was so slow that the listener picked up a newspaper and read for awhile when he was generating his message using a Lightwriter. However, she does get kudos for not ignoring him, but waiting and then responding to his comment about an upcoming movie. There are thousands of AAC users in our country. I am thankful that your story has drawn attention to their struggles.
Ebert: Compared to him, I'm like lightning. And think of the man who wrote a great book by blinking his eyelids! Humans must communicate.
Thanks for sharing - both of you. There is so much in each one of us, if we would just open ourselves and pour it out. Most don't...and won't. I don't agree with your politics, but I love your heart, Ebert. You are a good man, and your blog touches a deep part of my humanity. Thank you. You challenge me. Thank you.
Roger,
Our mutual friend, Sally F, of WF&F, told me about your journal and sent it to me. After a dozen lost years, we were catching up on births, deaths, triumphs, tragedies and the predictable, yet incomprehensible vagaries of lives we should have shared more closely. Having always appreciated your contribution to the dwindling remnants of modern culture, I can only admire your resolute acceptance of today's harsh reality and hope that there's just rewards to be found in the rich recorded library of your early career.
That you can write so well may seem a paltry reward for your well-spent youth, but the manner in which you do it is clearly uplifting, That you tacked on the Dirty Hungarian Phrase Book is beyond words.
On Thanksgiving, I visited with my sister's family, including my 44 year-old autistic nephew, who hasn't spoken since he was two-year old. He has spent his torment locked in an non-speaking role that I could never endure. Despite the unceasing efforts of his parents and siblings, he and his family have had no relief for 42 years. I am trying to find someone who is able to create an app for an iPad that can do text-to-voice.
Most of this probably could not pass the Siskel Lip Flap test, but I always felt that there is a certain yearning for understanding and acceptance in those who digress, meander and fall short of the point. For them, it's the verbal equivalent of stopping to smell the roses.
Roger and Patrick, thank you for being courageous enough to share your personal experiences with us. I won't pretend to understand what you must go through on a daily basis, but know that you have my love and support. Both of you are truly inspiring.
Roger, I watched you and Gene Siskel often enough through the years on “At The Movies” that I can still hear your voice, loud and clear. I can hear Siskel's too.
Many years ago, my best girlfriend's mother, a life-long smoker, fought a long battle with throat cancer. Phyllis was so addicted to cigarettes that even after throat surgery, she smoked through her stoma. The cancer metastasized and eventually took her life. But to her dying day, she never gave up smoking. Thinking of Phyllis conjures up images of the late Yul Brynner, who also died of smoking-related cancer, and the anti-smoking ad he appeared in on TV, which ran after his death. If I remember correctly, Brynner's message was a simple one: Don't start. Smoking, that is.
At about the time the doctors told Phyllis her voice box would have to come out, she made a tape of her voice so that her children (and grandchildren) could remember what she sounded like. Wonderful that she did that, though I don't think it's possible for a child to forget the sound of its own mother's voice.
When I watch kids and young people texting so adroitly, I often wonder if mankind is going to eventually evolve into a species that no longer needs verbal communication. Kind of like that episode of Star Trek, “The Menagerie,” where the Talosians communicated telepathically. Maybe Gene Roddenberry was on to something.
I don't have answers for you or Patrick. But as said upthread, I too believe there are so many brilliant minds in the world, that surely someone can up with workable solutions for you. In the meantime, I hope that both of you blokes continue to lead happy, productive, interesting lives.
Hi, Roger. It sounds, by your frustration with the lady that couldn't read the note, that I'd be one of those people that would make you mad in my presense. I can't read except with difficulty and a magnifying glass. I read and write for a living, but I use a 40" monitor to help (and then it's still hard). I can't remember the last time I was able to read a price tag in the store or the expiraiton date on milk or whether I'm buying the diet or non-diet version of a drink (I just guess the best I can). My right eye's useless and my left is spotty at best.
I do try to remember to carry at least 2 magnifying glasses on me everywhere I go (which helps, unless I happen to forget them both), but if someone can't read what you write, they probably have a similar problem to yours but with a different sense.
And don't forget some of us can't understand people who speak anyway. I have had a co-worker from Texas/some-southern-state for over ten years, and heck if I understand what he says even half the time. I was on a plane to South Africa one time, and the stewardess kept asking me a question, and I just couldn't figure out what she was saying even though it was English. She got very frustrated with me.
But Roger, please remember that it's not necessarily you that's the reason people can't read or understand what you say. Some people really have problems with this.
I really do empathize with you. My grandfather lost his larynx before I was born, and the doctors during the surgery accidentally cut the nerve to his tongue. So my whole life that I knew him he either spoke by burping and forming words out of burps or by writing on a note pad (this was long before personal computers).
Yes, my grandfather got frustrated sometimes when he couldn't be understood, but that's just life, Roger. Life is damned hard, and the longer we live the harder it gets. I know it gets frustrating; I know you have to periodically re-search for reasons to live. But you've got to keep re-deciding what's important for you so you can keep going.
I can't remember how many years of my left eye problems I kept thinking, at least my right eye is correctable. And then when my right eye went blind I had to suddenly figure out a new "at least" reason.
Talking was important to you. You've always been one of the great orators. But you're more than an orator and have always been more than that. You're still an important person, Roger, and everyone like you and like Patrick Bowes with that problem is likewise still an important person.
(Web page timed out. sorry if you got this twice. I recommend not double posting.)
Ebert: It's foolish to make a list, but I'd rather see than speak. Actually, it's more than foolish. It's inane. I'd rather start over again with a clean slate.
I remember watching that movie you mention in one of your replies, The diving bell and the butterfly, and feeling frustrated and helpless just by watching what was going on on the screen. I remember I tried to put myself in that position, and I got to the conclusion that I would ask for death.
At the end when I saw it was based on a true story and that he had finished his book, I was so striked by the man's will to communicate and to not feel useless, that I shed a few tears. The tears were not only for the man, but for myself, and all others who take a simple act as talking on the phone with our loved ones for granted. The extent to which people such as Jean-Dominique Bauby, Pat, and yourself have gone and are willing to go to perfom such seemingly mundane acts puts the rest of us to shame.
May you find some comfort knowing that you have inspired readers to strive and become better versions of ourselves. May you rest knowing that we have heard your voice loud and clear spoken to us in these words, and that our lives took a turn for the better.
I had an appointment with my psychiatrist yesterday, and one of the things I said about how great it is that my best friend has moved back in with us is that she's mentally ill, too. One of the advantages to this--and, yes, there are disadvantages, especially for my poor boyfriend living with the two crazy women--is that she understands when I am freaking out, and I understand when she is. She woke me up this morning so that she would just have someone to talk to. It was something she really needed, and I understand that need.
Normal people try to understand, and often they come quite close. But I flatly told my psychiatrist that he doesn't, because he's never lived through it. (I also have to play "mine is worse than yours" briefly, though of course it isn't, inasmuch as you can't imitate the experience of having mine even a little.) I think you and I and Pat all know what it is like for what we are saying to be left unheard, even if people hear my voice. After all, my problems are all in my head. You know, where I keep my brain.
I also have to agree that, for the chance to have a conversation with you, I would bite my tongue and let you write out your thoughts, then take the time to read them. (I don't even need glasses!) Even if it weren't hopelessly rude not to. Or at least I would once I had firmly stamped down my fangirl impulse to babble, which I'm sure you'd manage to suffer through patiently. I doubt I'd be the first experience you'd have with it.
I have Asperger's Syndrome, and the frustrations you both describe are very familiar. The conversation always moves too quickly. My difficulty is with processing the flow of information rather than the physical act of speaking, but the result is the same - I can't keep up, people don't wait, and when I do manage to contribute something I'm nearly always misunderstood. As a result I've spent most of my life as a listener, unable to join in to most conversations.
The internet has given me a social life that I never could have had otherwise. For those who have had a normal social life and then lost it, I'm sure it doesn't replace face-to-face interaction. But it's a hell of a lot better than what would have been available not so many years ago.
Thanks you for yet another moving post.
Regarding your challenges in participating fully in meetings, the ADA requires accommodation of disabilities for meetings of public entities, & most professional groups will meet those needs if notified in advance. If I were in your predicament, I would either request or bring with me someone whose sole role is to read my written-out comments, and I would let the meeting coordinator or chairman know who I am, my credentials (i.e., value of making the effort to be able to hear my comments), and how those comments will be made available to the group. And I would encourage both of you to learn ASL, as ASL translators will provide similar services, & ASL is a very elegant and eloquent language as you become fluent.
To both Mr. Bowes and Mr. Ebert, Thanks for sharing your thoughts and experiences. I
Since having radiation treatments years ago for thyroid cancer, I lose my voice 3-4 times a year. I am grateful that I have my voice some of the time. But I've had those moments of being misunderstood, of being ignored, of wanting to speak but having no ability to do so. It's a beautiful thing our voice and I don't think we often realize its significance--the subtleties of emotion and meaning it can convey, the way that it identifies us. I am sorry for the loss you both have faced. I am grateful though that we have these other avenues of communication to share our experiences and find some solace in each other. Thanks again to both of you for writing.
Response to J on December 10, 2010 10:16 PM
Hi, J. You said that you suffer from shyness, drawing blanks, and not otherwise being able to communicate effectively, despite having functioning vocal parts. This indicates a mental block, something keeping you from being an active contributor in live social situations. You said you struggle to keep your voice at a loud enough volume, and stutter sometimes. And you later regret not having said something which you should have.
My guess is that you have built up a pattern of behavior that is reinforcing itself in your mind, a pattern that says, "FAILURE." You remember all your awkward social situations and how much they sucked, and your mind automatically applies that to the current situation. This fear and anxiety impede you from being fully present and aware in the situation, by turning your attention inward, at yourself, rather than outward, towards the rest of the group and the topic at hand. I assume that sometimes you try to overcome this, but of course, the pattern repeats itself again and you are left with another painful memory of why you don't speak out in public.
What you need to do in order to overcome this is to experience a significantly better social interaction that will challenge your current pattern of failure. To do this, you need to prepare. Like an wrestler mentally preparing himself to take down his opponents in the ring by practicing and memorizing the correct moves, you must learn the correct social moves, and apply them successfully. Certain things like body language, eye contact, voice volume, and ability to concentrate are all factors in how you will do socially. And, since you aren't good with them now, why would you suddenly be good with them again, unless you've recognized what needs to be changed, and done at least some mental work on changing them? For instance, at your next social gathering, tell yourself before going in, "I am going to maintain eye contact, form thoughts quickly, and speak them aloud in a volume that will command people's attention." Work on that, then your pattern will change from one of failure to one of success. But not without the work.
Roger, I have a question regarding your experience using real sign language: You said in this article that you tried to use sign language, but people just don't understand what your talking aboot. Have you tried having your wife Chaz learn about sign language, and then using your wife to interpret what your saying in sign language to whoever person that doesn't know anythong about sign language while trying to have a conversation with you? Hope my advice helps you!(that is if you ever want to attempt use sign language again.)
Ebert: Humans MUST communicate.
Helen Keller surely agreed.
Roger, do you happen to know if anything happened to a comment I posted on this thread last night? I'm not seeing it here. If not, it's not a big deal (it was kind of ass-kissy); just thought I'd check.
One of the things I mentioned in the comment was how this post reminded me of a conversation from the film "Before Sunrise." Ethan Hawke's character was telling Julie Delpy's character about a study conducted on people who had been affected by life-changing injuries. The study found that, contrary to popular belief, the injuries did not cause people to become depressed and pessimistic, unless those were traits they had already possessed. Those injured who were previously upbeat, positive-thinking individuals remained so as well. It was mentioned that there was always a period of adjustment after such a drastic event had occurred, but after people became accustomed to their new circumstances, they had largely the same outlook on life that they did before.
I think you, Roger, and Pat as well, are people who were going to do what they do regardless of the circumstances. I'm not sure you prescribe to the whole "everything happens for a reason" spiel, and I don't want to turn this comment into something preachy. I think an adage we might both be able to agree on is this: when life gave you a lemon, you made some pretty damn good lemonade. I think Pat's well on his way to doing the same thing.
I recognize some of the moments from Ebertfest Randy Masters wrote of. I remember the meet and greet, wondering if it was weird that I had brought you a gift, then feeling extremely inadequate when a woman presented you with a beautiful painting she had done herself, and I handed you a DVD of "Firefly" (I KNEW i should've gone with Blu-Ray). You were incredibly gracious regardless, and even though you couldn't speak, your warmth was unmistakeable. Randy also was very kind to me, and took a great photo of you and I together at the Far-Flung Correspondents panel.
I don't know of anything I can say that would make things any easier for you; I doubt such an expression exists. One thing I will tell you, however, is this: if I get the opportunity to speak with you at Ebertfest in April, I'll make DAMN well sure that I or whoever else is in the conversation keep our mouths shut when you're trying to get a punchline in.
Ebert: Your being there was the real gift.
I publish every comment except for the obvious violations. I looked in Spam and found nothing.
I imagine people must bring up ASL to you all the time, but I'm going to go ahead and mention it again. I have a good friend who had throat cancer late last year and lost his ability to speak. His story goes that while at the hospital, he saw two Deaf people signing and realized that if he could sign, he could still have a voice. Three months later he was able to speak again but he continued to learn ASL. This old man is full of life and he is very funny. He is always making jokes. Now he does it in ASL. He has a lot to say and I feel very fortunate to be able to talk with him.
ASL is not English. It is a completely different language but it is a language. In my opinion, it is a beautiful language. As for people not being willing to learn, this week it was reported that ASL is the fourth most studied foreign language in the U.S. (http://tinyurl.com/27je66l) So you probably won't find many ASL users, but they are out there.
I'm not sure what the chances are that my friend will lose his voice for good but he is very motivated and actually started learning ASL on his own. I'm assuming that you have better access to resources than my friend and since you can't speak, ASL might be easier for you to learn. My friend still has a lot to say, as do you. Deaf people sign because there really isn't another option for them to truly express themselves. Using an interpreter to carry your ASL into a room full of English speakers is no different than if you ever used an interpreter to speak to a group of non-English speakers in the past. I understand that you can write and still have a dialog. But a dialog is not a conversation.
On a personal note, I am 27 years old and have been a fan of yours since I was very young. If I do ever get to meet you, I would love to be able to have a real conversation with you. If you learn to sign by then, I would love to have that conversation, no matter how brief.
And a note for Patrick... You sound like an amazing teacher. Please, don't stop teaching! I have been doing my master's degree online and I have to tell you that there are good teachers online and there are bad teachers online. Just like in brick and mortar schools. I have had amazing teachers that were able to shine through the online environment and use the medium to truly reach students. I encourage you to continue pursuing teaching online and sharing your gift and desire with the world. We can never have too many good teachers.
Josué
One more thing: I think I accidentally wrote "prescribe" when I meant to write "subscribe." Maybe no one would've noticed, but it's going to bother me every time I see it if I don't say something. That's all for now.
Here's hoping:
http://www.wired.com/wiredscience/2010/11/mouse-aging-reversal/
Lot more to this on the surface: not only "age reversal" but actually stopping cancer, diabetes, - any negative mutation. Perhaps regenerative properties as well?
As heard on NPR
Roger:
The first painting on your blog is really fascinating. What's it called and who's the artist?
Mr. Ebert,
I feel really moved that you responded so kindly and sincerely to Pat's letter to you.
Mr. Bowes and Mr. Ebert,
I hope you have every kind of healing possible and impossible. I wish for you a drink of water and a loud laugh. And if not, happy, grateful, joyous, beloved times anyway.
It would seem part of the problem is attention span and patience level. We're such a fast paced society and so used to having everything-including verbal communication-move at lightning speed. So when those of us who are blessed with the faculty of speech interact with somebody who is mute, we need to take a deep breath and slow down.
I hope some kind of technological breakthrough will make life easier for Roger and Patirck, but I do think anyone who is interacting with them should be mindful of the need for the sort of patience and concentration that's required.
Roger,
My wife has told me more than once that when she has troubles to tell me, she would rather I not offer a solution - what she really wants is understanding. So, forgive me for this if it seems to be something other than a kind of understanding (and it's certainly not a solution, in any case).
But here goes: What you've written tells us so much about your very difficult-to-understand situation. When I say "us," I mean the thousands of readers of your blog. But wouldn't it be useful and worthwhile if you were to put these thoughts, augmented with elaborations, into an accessible book? Then the kind of understanding your blog-followers have would be available to not just thousands, but hundreds of thousands or even millions of readers. This could be of real benefit to people in the situation of speechlessness that you and Patrick, and no doubt many others, share.
"Ladle Rat Rotten Hut", a homophonically transformed version of "Little Red Riding Hood", begins with this gem: "Wants pawn term, dare worsted ladle gull hoe lift wetter murder inner ladle cordage." A professor of French wrote the story to argue that intonation is as important as meaning when speaking. I'm sure he would have appreciated this blog entry. Here's a link to listen to the story:
http://www.exploratorium.edu/exhibits/ladle/ladle.ram
When I was little I used to fantasize about having volume control knobs on my ears so that I could turn them off and on at will. Actually, I still have that fantasy!
Thank you for sharing Pat's story and your own. They've made me extra aware of the gift of communication and the importance of listening with patience to others, with the volume knobs turned to high.
Man, it's quite sad that three of my favorite writers are all having, or have recently had, major health problems. :(
On the non-fiction side, yourself and Christopher Hitchens, whose writings on dealing with cancer have been quite fascinating. Then on the fiction side, Sir Terry Pratchett, diagnosed with Alzheimer's at the age of 59, and, again like you and Hitch, writing about it. He wrote something very touching about it just a couple months ago that's worth reading. It's at http://informahealthcare.com/doi/full/10.3109/09638231003728190
Whoa! That totally reminded me of that one book I read in my Junior year called "Johnny Got HIs Gun". The dude in the book was a soldier and he got injured so bad that he lost his whole mouthh, doesn't have any ears or eyes maybe not even a nose and lost all of his arms and legs. People in my class kept saying that if they were going through like that, they would try to find a way to tell the people outside to kill themselves but reading this, you guys are way more optimistic than they are.
But I think there are more people who knows how you guys feel than you think. Like the immigrants in this country, though they can actually speak, hardly anybody can understand them and they find it difficult to express themselves.
I have a child with autism. He is nearly 5 and is still non-verbal. He was diagnosed at an early age and I guess I always just assumed with all of our work he would develop speech. I know there is still time and have not completely abandoned hope but as the years go by and he still has very limited receptive language, much less any expressive, it seems like maybe it's just not in the cards. He has not picked up sign very well. The motor movements are difficult for him and he more than likely has apraxia so after two years of trying sign language we have moved on to PECS in hopes that one day he will use AAC speech device, an Ipad, or a computer. I know too well the limitations one has when they don't have a voice. My son's voice is so limited now, he can't even shake his head to indicate yes or no, when asked a question. I have these recurring dreams in which he will be talking. It seems so natural in my dream. It's not of him saying he loves me or something like that, it's just mundane sentences like "Where are my shoes?". It's funny I read this blog and thought, I had been thinking of these devices in a hope for a way inside him. I am so desperate for him to have a voice, any voice, I haven't really thought about their limitations. I remain hopeful though. I
Thank you for the link to that piece by Sir Terry. I've been a fan of his for ages, and I hadn't encountered it yet. I remember being devastated when I heard his diagnosis, and I think of every new book of his as a gift. (Him, I've met, Roger; clearly, this is a failing of mine not to be able to afford the trip to Ebert Fest and meet you who live on the same continent as I.) Though I Shall Wear Midnight is only available on CD in an abridged edition, so I'd like to have stern words with his publishers.
I can sympathize with him, too, when he says that a doctor told him he was too young to have Alzheimer's. I was told by three medical professionals in fifteen minutes that I'm too young to have arthritis. (The actual doctor said I was "probably too young to have osteoarthritis," though he changed his mind after an examination and medical history.) I think a lot of us with serious and/or chronic health care issues spend a lot of time floating in the Diagnosis Place. I know that I was relieved, when I was in seventh grade, to be diagnosed, finally, with what was called at the time manic depression. (When I started showing signs in third grade, I was too young for that, too.) Just the notion of "Oh. That's the problem." There's no cure, but at least you can put your finger on it. Though I'm not sure I'd want to if it meant seeing the inevitable course of your illness as Sir Terry has. A difficult choice, surely.
No offense, Roger, but I'd much rather lose my voice in the way you have than in the way he's going to. At that, I only have his physical voice in my head because I went to the last book signing/reading he did up in Seattle when Thud! came out. Whereas I will always have the fond memory of hearing you call Richard an android over Prairie Home Companion. You were right, of course.
Thanks for this wonderful blog. I promise to keep reading as long as you keep writing.
I was a longtime listener of your TV show. When I read your blog I hear your voice in my mind.
Returning to the topic of communication, I have more food for thought for y'all. Twenty years ago when I first got on the Internet it was such an eye opener for me. For the first time I was on completely equal footing with everyone else. I could hold extended conversations without missing words, I could participate in arbitrarily large discussions with arbitrary numbers of people and keep up. Things that I could never do in the hearing world.
Ironically, over the last five or so years, this has changed. With *everyone* being online, bandwidth at enormous proportions and the advent of YouTube, podcasts, etc, I am slipping back into the position I have here in real life. I join a blog, and articles start posting uncaptioned video clips. Or someone who seems like a very interesting or knowledgeable person publishes pod casts. I don't think I mentioned I was deaf for the first ten or so years I was online unless I wound up meeting someone I'd first met online. Increasingly I have to point out that I am, when I can't participate in a particular venue.
I wrote about this in a bit more detail here http://tinyurl.com/272m2m2 but I think you all get the idea. Ironic.
I have to say, those of you who described the shortcomings you see with having someone else (or something) voice for you, in terms of not carrying your particular inflections and such to communicate those extra details -- that would never have occurred to me. We (deaf) are so happy when we have a good interpreter available, we can make our own decisions and communicate our own choices, instead of having someone else do that because we have no voice. But of course if you had communicated for yourself first, a voice interpreter will be second best from your perspective. I hadn't thought of that at all...
"I publish every comment except for the obvious violations. I looked in Spam and found nothing."
Yeah, I kind of thought the problem was on my end. Like I said, it wasn't exactly my best work, so no big deal.
I'm really looking forward to Ebertfest in April. I'm hoping to see some familiar faces this time. I don't know if Tom Dark's going again, but walking to the Virginia Theater with him was one of the highlights of my trip; perhaps I shouldn't have been so surprised, but he was every bit as eccentric and entertaining in person as he is on the blog. And I think (but I'm not positive) I recall Marie Haws mentioning she might go to the next one; she won't be a familiar face, as we've never met, but I'd love to meet the person responsible for some of my favorite comments on the blog, as well as the Ebertclub newsletters (and if she wants to she can finally slap me for accidentally calling her a "tracer" back in the day). And I remember my favorite movies from the festival; "Trucker," and "Barfly," and "Vincent: A Life in Color," and "Synecdoche, New York," and I can't wait to see what's playing this time.
Also, one thing I'm making sure I do at least once before I come back home: going to the Steak 'N Shake. I heard people talking about it the entire festival, and it sounded AWESOME, but I never knew where the hell it was. My last day in Champaign, on the cab drive to the airport, I was spacing out, gazing out the window, when we passed it. It was right down the road from my hotel. It's not getting by me this time.
I have always had my voice, so I have no clue about what it would be like to lose it. I am certainly not fond of "lip flap". So few people listen to others or even listen to themselves! Everything that enters the head pours out the mouth.
I hope you know that while you may not physically be able to talk, your blogs speak volumes to so many of us! They are thoughtful and thought-provoking.
Never stop writing and we will never stop reading!
My daughter may never speak fluently. There are whole rafts of sounds she cannot make, and she communicates with a mishmash of signing, a few words, and a lot of pointing, head banging and crying. I see every day how much she struggles to communicate. The thing that keeps me hoping is that at 5, with severe global delays, she now has a teacher who is confident that they will teach her to read.
I have a friend who doesn't speak. She uses text-to-speech and most of her social interaction happens in text-based environments like LiveJournal and Secondlife. She's one of the brightest people I know, and a dear friend, and we find our common ground in a preference for text-based communication.
I can speak. But I find that even in places like Second Life, which support voice communication, I prefer not having to fight to get a word in... by typing, I can say what is on my mind without waiting for a space in the conversation. But it's always odd being in an environment where some of the people are talking and some are typing... when people have to type to talk, they blather less. And so when I have friends who can't deal with trying to parse or produce spoken language, we all type, and it works just fine.
Touch typing makes a huge difference. As do the growing raft of ways that we add verbal mannerisms to our typed speech.
Roger-
I'm an American living and working in China for many years (though I went to the University of Chicago and called Hyde Park home for six years!)
While in China I spent some time as an ESL teacher to Chinese students.
Many of them have fine vocabularies from years of patient study in public school. They know their pronunciation symbols better than most American English speakers. But most have no time to practice spoken English, certainly not until recently with a native speaker. So, the music of the language is all wrong. It's one thing to pronounce a given word with dictionary-precision, which many can do. It's the symphony of connecting words together into sentences and beyond that is missing. The rhythm, pacing, tone, emphasis - as Patrick mentions - is so critically important to conveying meaning and emotional impact. There are techniques to learning and teaching this, but it's the "secret" to speaking well. Music, and singing aloud, is one of the best ways to get the feeling of the rhythm into their bloodstream.
Chinese, on the other hand, requires emphasis on the tone of each word. Foreign to the American speaker''s experience. I may know many Chinese words,but if I get the tone wrong (which I often do), I may be accidentally speaking a completely different word! Imagine the laughs they must be having at my expense. I must be creating many malapropisms without knowing it.
And, years ago, in Duluth, I choked on a glass of cranberry juice. I coughed so hard that I severed the nerves in my vocal chords. I instantly lost the ability to speak, and thought that it never would return. 6 months later the nerves healed themselves and I could speak again. I know what it is like. It was profound. I accepted it at the time. I did good writing. I had permission to be silent. It was peaceful.
I wouldn't worry too much about losing the power of speech Mr. Ebert. What with facebook and other various ways of communicating to each other. One day we will all have text to speech because as the technophobes warn, "We are all becoming incapable of human interaction."
There is, or at least there appears to me, a peculiar inequality between the levels of tolerance people have for those who are not able to speak, or hear, and those who are not able to see. When I was losing my sight, a process mercifully arrested (and to a great extent reversed) by surgery, I was overwhelmed by the levels of sympathy and patience to which my condition evidently entitled me.
In contrast, those people I know with hearing loss (including one who is deaf in one ear, has pronounced hearing difficulties in the other, and is nevertheless one of the quickest-witted people I have ever known), or difficulties with speech, seem entitled to far less understanding. As you point out, in social situations they are just considered a bit slow, or generally thought not worth the effort. It’s a particular shame as, in my experience, those who know their chances to engage in conversation are likely to be limited tend to say far more considered and incisive things when they do speak than those of us who can subject the world to limitless chatter.
I think it’s true, too, that the key to managing chronic health conditions can often be acceptance of them. The Shawshank Redemption taught us all that hope can set you free, but it can also confine you. I was driven to some very dark places by holding on to the hope that I could – or at least should – be able to do everything I wanted despite my incapacitating illness. I’ve achieved far more since I accepted the things I cannot change, changed some of things I can, and developed the wisdom to tell the difference.
With that said, it’s also, of course, important to rage against the dying of the light where we can and it is here that I think you, Mr Ebert, set such an incredible example. For all the lessons I’ve learnt from you about how to write about films, it’s your example of how to deal with catastrophic ill health I find most valuable. Anyone who responds to losing the ability to eat solid food by releasing a cookbook is a man the whole world should imitate.
To invoke Einstein's theory of relativity, I am reminded of the movie "Who's Afraid of Virginia Woolf?" Here are two individuals with all organs intact, particularly the vocal, engaging in the cannibalistic counterpart of communication. In a sense, communication has yet to be invented or discovered. Nations slaughter each other because they fail to talk.The blood splattered pages of history of Early Man (that's us) attest to the invisible walls that separate hearts.
I began reading your reviews as a kid back in the nineties. Somehow your words were able to move this young kid from South Bend, even though I often was not old enough to have access to all of the films you reviewed. I would check out copies of your books from the library and flip through them to read reviews of movies I had already seen. Then I found myself reading the rest, because I thought you were funny and often comforting.
The Internet arrived towards the end of my high-school days when I was fully immersed in my amateur acting career. Reading your reviews helped me to grasp at least one man's ideas about story-structure, acting technique, and just having a good time at the cinema.
In your review of "Love! Valour! Compassion!" you wrote, “the characters' sexuality is the air they breathe, the natures they were given; the point is not how they make love, but simply how they love, or fail to love.” You have no idea how these words stuck to me as I began to accept my sexuality and share it openly with others.
Today I am a young professor of Voice and Speech at the University of Montana. I get to spend every day with my voice and the voices of young aspiring actors who are still finding out that they have a lot to say and what a joy it is to be heard and move another person with the vibrations of speech.
Tonight, I mourn the loss of your speech, but I also smile because the voice remains.
Your words continue to move me, Roger Ebert, and I intend to share this blog post with my students for as long as I teach. I would not be the man I am today without your voice. Please continue to share it, regardless of how the vibrations travel.
I am always thrilled when you have a new blog entry on the right side of your main page. I know that I'm in for something authentic, revealing and poignant that will make me think, feel, laugh, cry, hope, question... This one, of course, is no exception. Thank you, Roger. And Patrick.
"There is no fate that cannot be surmounted by scorn." - Albert Camus
Continue scorning, Mr. Ebert, and if you haven't yet done so, start!
I am also a PWS, although my catch stutter is nowhere near severe. It is difficult for me to start some words that have hard consonant sounds at their beginning (hard C's and K's, some D's are among the common), but usually only when it would be the first word that I start a section of conversation with. I've compensated over the years by using "run-ups" (phrases that smooth the transition into a problem word) or by faking that a given word has slipped my mind, while I figure out how I'll get it out of my mouth once I "remember". Otherwise, I have developed enough self-confidence over the years to overcome the limitations of this thing that I deal with. That can be hard to do, though, for those that didn't have a loving and caring environment in which to develop those skills.
It occurred to me as I was sitting through a very long business meeting that most decent meeting rooms come with a projector for PowerPoint Presentations. This is just a situational hack, but perhaps your laptop can hook up to the projector system, allowing you to have a giant notepad that everyone can see? You wouldn't even need special software, Word would do. Or something like Instant Messenger that bleeps when you enter a line, which would catch everyone's attention. Faster than text-to-speech, depending on your typing speed. You'd get bold, italics, and capital letters for emphasis. If a meeting room doesn't have such a system, there are also pretty decent little digital projectors nowadays you can buy that will plug into your laptop and project whatevers on your screen to the wall at good resolution. No good for social situations, but in a meeting it could maybe help..
I've only started reading your blog within the past year, and did not know very much about you previously. In a way that is a blessing, because I come to you with no pretense of "knowing" you. As I read your blog more and more, I wish I could sit in front of you and, smiling, ask "Who ARE you?" and I suspect who you were previously was only a foretelling of who you are today, and who you are in the process of becoming.
You have again and again bared your soul eloquently. Reading about your loss of speech completely deflated me, and rendered me speechless as well, for a time.
I have tears in my eyes. Thank you for sharing yourself, and your struggle with all of us. It is a priviledge I cannot explain. Just reading this has really opened my eyes to many, many things I have taken for granted.
Just as I cannot fully "know" what this is like without walking in your shoes, you will never know how your blog has positively affected and change so many people.
Have a wonderful holiday surrounded by loved ones - Elle
Roger and pat,
THank you for your posts.
I have been a surgical nurse now for 8 years working on an Ear nose and throat floor, periodically looking after people who have had total laryngectomies, glossectomies, etc..
but only from reading this today has made me into a better nurse and even more empathetic the next time I am with my patients.
Because of the acuity after surgery, they do not have the means or patience (nor do I have the patience by working on a busy unit) to express themselves the way you and pat did. Thank you again!!
Here wishing we all were as accepting and noble as you.
Your fan, Ron.
Reply to: And, years ago, in Duluth, I choked on a glass of cranberry juice. I coughed so hard that I severed the nerves in my vocal chords. I instantly lost the ability to speak, and thought that it never would return. 6 months later the nerves healed themselves and I could speak again.
After watching a lot of action movies like "Die Hard" ... I'm always frustrated and (educated?) when I realize how vulnerable the human body is.
Michael Vick's knee injury.... I'm still amazed that he's able to walk.
Years ago, George Lucas sold a company called "Pixar" to Steve Jobs. The technology for computer animation had a steep learning curve.
Musicals aren't popular now, but "The Julie Andrews Story" will be a great musical some day. A true story. Girl with four octaves of vocal range goes to Broadway as Guinevere in Camelot, sings with Robert Goulet in his first role, Mary Poppins, loses a role to Audrey Hepburn, the next year is given an Oscar that Audrey didn't get...
The secret to "The Julie Andrews Story"... is a synthetic singing voice. All you need to do is get Pixar interested... convince them that untold riches await the studio that unlocks the secret of creating a synthetic voice that duplicates Julie Andrews... and then, buy the rights to all the Broadway songs.
Roger, you can't speak, but can you laugh?
Can you whisper?
Sorry, I just noticed that my last question was already asked.
It's a shame that people have their best physical condition when they are young and lose their senses and strength as they age. Imagine how different the world would be if people could only listen but not speak at a young age, and gained physical strength and speech towards the end of life. Youth is wasted on the young, right?
Oh this is really gives me a motive for a deep thought, I can agree with that just as only with the art form not the freaking theory and science,
Roger, have you looked into Plover? It is an open source stenography program that might be able to give you the ability to type at speeds equal to or greater than the speed of human speech. Here's a blog post where one of the Plover developers specifically mentions you as an example of someone who might benefit from it:
http://plover.stenoknight.com/2010/03/how-to-speak-with-your-fingers.html
It looks like Plover was just released publicly in October of this year. I don't know how well it works at present, but as open source software it has the potential to improve rapidly if other programmers join in developing the project. It currently runs on Linux, which is close to the Unix that runs under the hook on Macintosh computers, so porting it over to the Macintosh should be pretty feasible. The developers have a roadmap indicating plans to do an OSX port and also to add text-to-speech functionality. If they develop the text-to-speech functionality, I imagine you could use the Cereproc software to achieve real-time speech that "sounds like Roger."
As a former journalist, I have experienced my own frustrations with the speed limits inherent in conventional typing. I am a pretty fast typist at 80-90 wpm, but in my days as a newspaper reporter I was often frustrated at the difficulty in capturing speakers' statements completely when covering public meetings. I still experience this frustration sometimes when attending conferences where I try to take detailed notes. I mention this simply to point out that people with speech disabilities are not the only people who could benefit from finding a solution to your particular problem -- and that's a good thing, because it means there are more people motivated to work on actually solving it.
Ebert: Thanks. I went there and left a comment. Fingers crossed.
HI Sean. We did share those moments at EbertFest.
In fact, you are in the two pictures that I've talked about. You're standing behind us in the Roger, Dave, and me picture. You're also in the Ebert Club picture that Ali Arikan posted on Facebook.
It was a pleasure to get to meet you. We should have hung out more, as it sounds like we were both attending by ourselves.
It's unlikely I'll be able to come this year, except maybe for a day trip.
I like this comment...it sums up my thoughts so well...that people, for the most part, talk too much!! Don't get me wrong...I still feel communication is important. But, I think there is a lack of vital information being conveyed during the average interaction. ...people talking just to hear themselves...or fill the silence. ...well...I tend to like the silence...it's peaceful. I wish people would stop "lip-flapping" long enough to enjoy it.
The soul that can speak through the eyes can also kiss with a gaze. ~Gustavo Adolfo Becquer
I've been thinking about your situation for some time now, at least with regard to the difficulty of using a text-to-speech device in conversation. The way a t/s (text/speech,NOT anything else 't/s' might stand for) device works makes engaging in conversation rather awkward--which is why you don't do it, if I understand correctly.
In any event, what I've been wondering is whether the technology --or whatever else is needed, such as programming --can be used to set a t/s device to 'broadcast' what is typed with something other than the 'send ' or 'enter' key. What if it could made to work by using the space bar? Its. ... true... the ..result...would ... be... something... like.... this, but it even that would be closer to 'real-time'; and surely no one who respects you would mind if your 'speech' was slow and deliberate. I wontgetinto . . .'tricks' . .
such . . . as . . . combiningwordsandsoforth . . . but presumably the potential would be there--if, of course, the underlying idea is feasible. Alas, I have no ideas regarding inflections.
Years ago, George Lucas sold a company called "Pixar" to Steve Jobs. The technology for computer animation had a steep learning curve.
Actually, he sold it to make back the shirt he'd lost on Labyrinth and Howard the Duck, the two projects whose profits were supposed to pay for the new Skywalker facilities in 1986--
Y'know, Bill...even without Muslims, you're just getting too cotton-pickin' loopy? ;)
The link to Mr. Bowes' blog seems to be down. I imagine the many well wishers crashed his server, lol.
Charlene, I am thankful that I have not seen that kind of selfishness carried to the extreme that it cost someone their life. It is certainly despicable that otherwise healthy people are so openly hostile to others for something like their health. I have Crohn's disease and have heard countless horror stories of teachers and bosses refusing to permit someone to go to the bathroom, just to prove that they had the authority to deny the request.
Demanding that someone with an injury perform a physical task, which has the potential to exacerbate the injury, or denying someone with a digestive disorder access to a restroom, or any other such mandate targeted at someone with a health concern is bad enough, but what is despicable is how the average co-worker will often take a perverse pleasure in seeing the affirmed put in such a position. This is, of course, provided you're already employed at the time the injury or illness occurs. Most people with any kind of chronic disorder have a very difficult time making it through the interview process without exposing their condition(s), and their application goes to the shredder in favor of someone who won't be such a "hassle."
The Journal of Occupational and Environmental Medicine published an article in 2008 detailing the cost to employers of having someone on the payroll with either Crohn's disease or ulcerative colitis, showing the average medical costs with and without surgery (a near inevitability), as well as cost in missed time, etc. to the company. No human resources director who saw that report would give a second look at any applicant with either disease. You can read more here: http://www.marketwatch.com/news/story/Companies-Pay-a-High-Price/story.aspx?guid={7A9AE153-3E73-4F7C-8268-10F08DAA41EF}
For what it is worth, your voice is clearer to me now than when I watched you with Gene on TV.
1. Mr. Ebert (and Mr. Bowes), thank you for sharing your experiences. As a physician, I am grateful for these lessons on empathy and patience, lessons I hope to teach my residents.
2 'The conversations of some people seem to drift in an eternal present.'-brilliant!
3. I may be incorrect, but aren't Chinese languages like Mandarin and Cantonese (likely other languages too) difficult for English speakers to learn because of the subtle nuances in pronunciation between various words? Seems to me that the technology you're looking for will come out of countries that communicate this way. People who regularly focus on the little differences in their speech that can change the tone and meaning of a conversation entirely, will hopefully be more likely to come up with the technology you need.
Roger--God bless you, Patrick, and everyone else suffering from this horrible disease. My family has been touched by cancer, but none of my relatives have endured what you and Patrick face; this discussion just makes me cherish my ability to communicate all the more, however long it lasts.
For years you've brought tremendous joy to people through your quick wit, sense of humor, and love of (good) movies. But I think that your journal postings bring so much more: a unique blend of reflection and thoughtfulness that you just don't see elsewhere in the national discourse. All I can say is thank you, and from a purely selfish point of view, please keep fighting so I can continue reading your posts. They elevate the level of discussion about whatever topic you choose to focus on. And even when you go back to movie reviews, you make a valuable contribution by providing a consistent voice against the 3D epidemic sweeping the nation. Thank you--and good luck.
At the end of his life, my father could speak, but we could only pretend to understand him. I do not know if he could see because he was terribly myopic and I now wonder how much control he had over his eyes or if the nurses remembered to put on his glasses. He could not write because he had long lost control over his hands and arms. He could not walk--his sense of balance was the first hint of a greater problem. At the end, when my mother could no longer care for him at home and was working full-time, he spent many, many hours alone watching TV in a care facility before he died of a pneumonia. He was in his early 50s and he had multiple sclerosis.
When I think of that time now, I no longer remember how he looked then. I remember his wheelchair. I remember sadness and his deep rage.
I prefer to remember my father when he was still able to walk. When he took us to Disneyland or to the beach. When he laughed and insisted on family rituals. There are so many things I wish I could have asked him, wished I knew about his childhood and his youth. I was in junior high when he finally died and because he could no longer communicate with anyone, his death seemed like a blessing.
A few years ago, I had major surgery on my spine and there was a chance I would be paralyzed. That's a lot to consider. I thought of my father. Luckily, the surgery was a success and I can walk and dance.
In many ways, my father's death and much later my surgery changed my views on life. I cannot help but think how people don't appreciate that they can walk, talk and write and spend endless hours doing nothing. And by nothing, I mean nothing of worth to other people and to the world. Our time on earth is limited and for some of us our time with the ability to speak, write and walk is also limited--more than we can possibly know.
As for Patrick, I don't ever think it is too late for love. I once met a woman who was leaving Los Angeles to be married to her childhood sweetheart. She was also a teacher and had retired. They re-connected at a class reunion.
When I was still single, I often thought true romance was more like Cyrano de Bergerac than Harlequin romance.
I feel obliged to comment on the notion that has expressed by a few in this thread re language, more specifically, 2nd language learning.
If you are not able to convey humour in your L2 then you have not learned the language. You know some phrases, are able to communicate more or less, but you are far from fluency. And if you use the mainstream, capitalized approach - via products and services that "guarantee results" because they are endorsed by the "EFF! BEE! AI!" (garsh!) etc etc - then yes, you too, can be among the many who spend hundreds, thousands and fall far short of fluency. I know lots of them who have spent years and continue to purchase products thinking they will get fluent if they just keep up. The paradigm is busted. Enough.
2nd, I am learning another language. Am teaching myself, sans the ridiculous products and courses etc etc designed and consumed in this "L2" industry in place of brains. I am having a blast. There are times in which I take it too seriously, I get too greedy, and I put more on my plate than I can maintain over the short term. Then I create work out of play. But these are a learner's mistakes. Most of the time it feels like play.
Immerse yourself sir. Saturate your life with the language to be learned. You will be amazed how it takes on a life and energy of its own, and you will feel you are being drawn forth towards a light, rather than merely toiling or slaving away. Language learning is fun, or you are doing it wrong. But it isnt fun because a software package is "designed" for "fun". It is fun because learning allows your mind to play and play, of course, allows your mind to learn. Godspeed.
/rant
I know nothing about what you and Patrick are going through Roger, and I know nothing about ASL, but I think the reader above who mentioned it is correct, especially for Patrick, who is currently dealing with loneliness.
While learning the language isn't going to help at cocktail parties with people like myself, it will open avenues of friendship and communication with people who have for various reasons also lost their voice. There are whole communities of people out their who are deaf, or who have had surgery that speak in sign. And from what little I know about signing, it is a nuanced language capable of intricate expression.
In the course of learning this language, I imagine Patrick will have a chance to meet many supportive people who can become the basis of a community--new friends to communicate with.
Finally, from reading Patrick's letter, it is obvious that he is a gifted teacher. It would be a real shame to lose this. Perhaps after learning ASL he could consider teaching deaf children--children who have also lost their voices, and need gifted teachers to inspire them and tell the the right books to read.
Patrick has to accept losing his voice. Until technological breakthroughs occur that's the way it is, but human beings are ingenious and adaptable. Their is much he can still contribute with a means to express himself.
This may sound like an obvious (or possibly impractical) idea, but have you considered learning to use a stenotype machine?
And/or has anyone considered creating an app for IPad (or any other configurable touch screen device) which will allow stenotyping? [Those are the "chord" keyboards which allow a single press (by multiple fingers at once) to type out whole syllables, words, and even complete common phrases in a single stroke. Seems to me it should be relatively simple to create one for a touch screen interface.]
This would not be of any help with bozos who dont read their glasses, but a chord keyboard could increase your typing speed dramatically (up to 300 words per minute, which is actual verbal speed for some people).
Just an idea. Probably not much help, since I am not technically savvy enough to actually invent something like this. But if you want to mention it to the tech boys who are working on your voice simulator, well, it couldnt hurt...
In any case, I hope the technology catches up for you. And sooner, rather than later.
Excellent comment Sheldon Rampton!
That looks like another piece in the puzzle to me. Stenography! Of course! So we already have a technology which reduces keystrokes. We have developing technology which translates the typed word into the spoken word. And yet MORE developing technology which can speak in Roger Ebert's voice! All very exciting.
Now then, who is out there working on putting emotion into computer voices? What technology will allow us to stress certain words, etc.. I've seen the first generation systems and they look so cumbersome. But surely their is a better way, and surely it's not as complicated as we now assume.
For example, a stenographer can (I assume) type a whole word with one "chorded" keystroke. What if the keyboard was sensitive in a way that it detects hard keystrokes and soft keystrokes? So that typing "I want that" gets spoken by the software as "I WANT that" or "I want THAT". Hmmmmm. intriguing.
I find the possibilities exciting!
To those who suggest both gentlemen learn ASL -- you must understand that ASL is a foreign language....you need an interpreter to "talk" to others. ASL will not provide instant understanding or instant communication, which both of these men are used to and long for. I work with people who do not have "instant" language, or communicate with smiles. What these gentlemen need is for others who are privileged to work with them to slow down and allow them to communicate as they are able, people who are willing to really listen.
First, thanks to those with Asperger's who mentioned their similar frustration with being unable to keep pace with a spoken conversation. As the mom of a teen DS with Asperger's, I know, intellectually speaking, that conversational difficulties come with the territory, yet seeing your comments closely identifying with the frustration Roger and Pat describe still caught me by surprise. It gives me a more visceral understanding of how difficult things can be for my DS in a roomful of people talking back and forth.
Second, I think a ASL-to-speech program would make huge amounts of sense, and it certainly seems within the realm of technical possibility. In fact, I googled and found a cool concept design for such a device here: http://tandibusiness.blogspot.com/2009/03/new-concept-portable-hand-to-speech-asl.html Now *that* would be really cool!
Since college, when I became friends with someone who was partially deaf, I've felt that we should teach sign language to everybody starting in elementary school, including the limited but still useful addition of International Sign Language. I know this is a controversial topic among the deaf community, but the idea of expanding International Sign Language to create a broader sign language that included a lot of expressions and concepts currently left out would be a great boon to society. Imagine being able to not only speak and express your thoughts conversationally again, but to be able to do so ANYwhere in the world without a major language barrier. You'd be immediately able to at least "get by" in places where you are totally unfamiliar with the language.
I think it also would help people visualize and express their ideas and thoughts better, too, when incorporating sign language. We use hand gestures and movements to help us remember, add nuance to meaning, etc, and having sign language common to all of us -- deaf or not -- would so open up expression and speaking, allow the hearing and the deaf to communicate without barrier, make us all able to speak without shouting across rooms or talking in movie theaters (see how I made it relevant to movies? haha!), and allow us all to live in the knowledge that loss of speaking will not be a loss of ability to express ourselves without writing.
This is very timely to me, too -- My friend John Downing, a wonderful man and activist in Virginia and a member of the Catholic Workers, lost his ability to speak the other day due to a prolonged hospitalization (initially due to pneumonia, but it got progressively worse and he nearly died the other day) that resulted in a need for a tracheostomy for him to continue breathing.
John has spinal muscular atrophy, must rely on a motorized wheelchair, has only limited mobility in his arms and neck (he is otherwise paralyzed and immobile, and has a steel rod in his spine), and now faces life without the ability to speak. John spent days every year at the fast and vigil against the death penalty, attended marches and rallies and protests for many social justice causes, and I hope he gets better soon and is able to leave the hospital to continue his good life and good work. And I hope technology, which has so far done so much to give him a high quality of life, will again come up with an answer for his speech loss.
And Mr. Ebert, I'll echo the comments of those who tell you that your blog is a voice that we'd never heard from you before, and it is a wonderful voice that we hear very loudly, more so even than anything we heard you speak on your show.
Roger,
So now that you cannot laugh out loud, what does it feel like? What do you feel at those times when you used to laugh out loud?
I'm moved by your writing and the community you've gathered around you, from Pat to Randy and Lara, who put aside political differences to communicate with you. By speaking from the heart with eloquence and insight, you've kept a fire burning in the depths of winter. Thank you.
Only recently have I discovered this blog
and I thank you, Mr. Ebert and Mr. Bowes, and everyone who shares so personally and caringly.
This has probably been mentioned before, but I want to recommend the play,
"Children of a Lesser God" by Mark Medoff,
if anyone has the chance to see it in a theater. The movie does Not convey fully the themes of the play.
Thank you, again, everyone, for these gifts of insight and honesty.
Roger - as noted by a few of the comments, my website did indeed crash. It's been a challenging few days and although it is still rough around the edges the site has been reconstructed under a new server. The web address is the same:
patbowes.com
Also, as a follow up, while trying to get some help fixing the website problem I had one heck of a time with Apple support because they kept sending me to different phone numbers. In complete frustration I actually tried to call them and I strained so hard to utter some words that it was giving me a headache. Two nights ago, rather than hanging up on me, one young man showed patience and understanding. His name is Marshall and he works in Texas. Marshall was very compassionate and he "got it" and he e-mailed me a piece of software that allowed us to have a live chat. I had Marshall on my iphone speaker asking questions and giving advice and I was responding in real time by typing my comments. As I noted earlier, I had my tongue removed one year ago last Friday on December 10, 2009. It's been a tough year, but I'm okay and I'm moving forward. The conversation with Marshall was wonderful. Roger, it was like ... a drink of water, a glass of root beer, an enjoyable social meal. Keep in mind that I live alone and that my blog helps me communicate and when it crashed it felt in a way like losing my voice all over again. It's a little thing, picking up the phone and calling a friend or family member just to chat, to let them know you care about them. It's something I never paid much attention to, like that penny laying on the ground that is seemingly of such little value we don't take the time or effort to bend over and pick it up. Little things ... God, it felt good just to chat without trying to contrive a way to express a complex thought in 8 words or less. I should mention, too, that I think the conversation was meant to happen. Marshall's mother is battling cancer and we were able to lean on each other during what was aptly named a help session.
Well, to your readers who have expressed such warm and kind thoughts and suggestions, I again say thank you. I also thank you for your patience with my website. As I said it's still a work in progress but at least it's up and running again, and so am I.
Thank you.
Pat
Ebert: Help lines always suck. The Apple guy who sent you chat software and chatted with you should be given a medal.
Chatting can be done many ways. I like iChat, which is probably what ehs ent you. You and the other person can see each other.
Roger -- Yes, people must communicate. In addition to expressing ourselves, we all need someone to receive that communication and acknowledge our experience in the world. In other words, we all need a mirror, like the mother in "The Joy Luck Club" who took off her necklace and put it around her daughter's neck and said, "I *see* you."
What a gift for you to tell Mr. Bowes, "I *see* you. I *hear* you."
Having some trouble posting! Have you considered using some type of overhead projector in meetings that can show what you are typing in real time? Everyone could see it, eliminating the need to come over to your iPad and read it. It might at least minimize the interruption to the flow of conversation. In time the participants would become accustomed to looking at the screen for your comments as they engage with others in the room. People do it in their homes all the time, watching TV and carrying on coversations or using the computer and talking to others. Might help?
Roger and Pat:
Your stories are touching, and your descriptions of the communication problems you encounter trigger my problem-solving side. I read your descriptions of how you attempt to communicate in meetings, but I didn't see this method mentioned.
Have either of you used a laptop connected to a projector? You could display your typed comments while being written, and, depending on your typing ability, could approach the normal speed of conversation.
While I realize it is still an inferior method of communication, and could result in some "dead air", it seems to me that as folks became more familiar with its use, it could enable you to more fully participate.
Have either of you tried this?
"Conversation "in the eternal present" - My (eventual) mentor and friend -an editor - Stuttered. Pausing, sometimes, 30 seconds. I looked into his eyes and Time Stopped. What he said was nuanced, witty, & wise. I listened, watched his body language when he considered the mot juste. Due to abuse, I have only 2 modes: Intense listening and recall or endless monologue (cognitive behavioural therapy taught me this is a shielding device.) In NYC, people seem to have an instinct that makes them talk to me. It is so relaxing for me to simply Be, to see thru their eyes - no demands. There are other Listeners. I don't know what I project. I am Mensa, speed reader, etudiante des ames humaines. I've found that peoples' deepest wishes eventually, surprisingly, are met. Somehow, you will be heard. I love your work and I like YOU. Coming from brokenness to expressing yourself, you have a friend. Best wishes - martiboheme
"Conversation "in the eternal present" - My (eventual) mentor and friend -an editor - Stuttered. Pausing, sometimes, 30 seconds. I looked into his eyes and Time Stopped. What he said was nuanced, witty, & wise. I listened, watched his body language when he considered the mot juste. Due to abuse, I have only 2 modes: Intense listening and recall or endless monologue (cognitive behavioural therapy taught me this is a shielding device.) In NYC, people seem to have an instinct that makes them talk to me. It is so relaxing for me to simply Be, to see thru their eyes - no demands. There are other Listeners. I don't know what I project. I am Mensa, speed reader, etudiante des ames humaines. I've found that peoples' deepest wishes eventually, surprisingly, are met. Somehow, you will be heard. I love your work and I like YOU. Coming from brokenness to expressing yourself, you have a friend. Best wishes - martiboheme
Just a quick response to the suggestions about using a projector in meetings. I have not tried that, though it has been suggested by family members. I think the suggestion has merit and I will look into it further with our tech folks. Meetings are held in a variety of venues and can be two people or two hundred people. In meetings where a projector is used I will have to see if my ipad or mac could link in somehow. I would imagine there's a way. There will always be obstacles but there are ways around the Maginots of life. In work meetings where there are two or three of us I often open up a Word document and turn the computer monitor so they can see it and I make the text very large. I'm not as good a typist as I need to be and I need to get some software and enhance my skills in that area. In those meetings with just a few people I need to find a way to be able to see on the monitor what I type and that results in turning it back and forth but most of that is simply me needing to improve my skills which I can and will do.
Actually, after a year of trying various tools and methods to communicate, I find that using an ipad with the Art Studio app that displays a blank white pad that I can write on with one finger and quickly clear the screen is as effective as anything for quick one on one discussions. I am actually using text to speech less and less because of the constant requests "Play that again." It's just as easy to type on proloquo and show it to someone, or handwrite a note and show it as it is to have it spoken and repeated. I think that it's just unnatural and catches people turning and leaning and wanting to catch every word, or they are surprised words start coming from the ipad and they aren't thinking about what is being said and instead are thinking initially, "Wow, that's pretty wild" and by the time they start listening they have missed the first part of what I am saying and indeed do need it to be repeated. No one is trying to be disrespectful, it's just the way it is. I am still struggling with trying to share a complex thought in a quick manner, which is why I have enjoyed blogging so much. After a few days of trying hard to find ways to limit what I say or change it to something simple it's relaxing to just sit down and fully express myself the way I want to. I should also say that e-mails continue to be a problem as tone is way too often misinterpreted.
Well, again my sincere thanks for all of the suggestions and support.
Pat Bowes
A very moving post, Roger. I have been a fan for ten or so years, and this is my very first comment here. That should say something about how deeply I feel for you and Mr. Bowes. I cannot fathom what it would be like to lose my power of speech. I have, however, experience major health problems, though nothing nearly so life-changing as you two have. When I was a kid, I suddenly came down with a viral heart infection and all sorts of neurological problems. I am completely healthy today - the dozens of doctors who saw me over the years say it's a miracle I've recovered - but I will never, ever forget what is was like to not be able to run, walk, or stand. The loneliness and isolation I felt being bedridden was, at times, crushing. As you can imagine, there aren't very many people, let alone kids, who are very excited to visit and "play" with a sickly kid who can't play like normal kids. I guess what I'm trying to say is several things:
1. In some small way, all who know loneliness can empathize with each other. In a weird way, we aren't alone. Even in isolation, we find ways to relate. I feel for you and Mr. Bowes, you feel for each other - and in our empathizing, there is a form of love.
2. Though I think I understand how important it is for your survival that you accept your condition as it is, and learn to live without speech, please don't give up hope, even if that means you'll be let down in the end. Doctors said my condition would most certainly get worse and worse, but today, I am running (in short spurts, mind you, but I still can run!) Never lose hope - even if it is hope you only admit to yourself.
3. I remember a post from a while back when you wrote that you're writing has improved since you lost your power of speech. It's true - you're writing has taken on a more inward, self-reflexive quality that I had only seen hints of in your writing pre-illness. I started writing more when I was sick. When something so vital is taken away, a vital appreciation for what we HAVE comes to life - at least, in my experience. In this way, your loss of speech has given you something special. I am not so naive to call it a "blessing," but I think something unique and extraordinary is gained through adversity.
Your writing is beautiful, Roger. I am thankful we can connect through writing and the internet.
Ebert: Now don't wait so long before commenting again.
Stutterers / PWS -- Please try singing your words. I have heard that it may work, and I pray that it is true.
To all who have any such problems with being understood -- I don't know what it's like. But as a chronic mental patient I occasionally (when quite ill) have inspired people with a sort of superstitious fear. More often, they need someone to explain me to them, and the only person available to explain is me. If you relate to that, I'm happy that I could understand at least that much. Such understanding is necessary to one's mental health, and that makes me grateful that we could all meet here. Mr. Ebert, your giving voice to these feelings and experiences will go on helping people who need understanding even after you are gone, for at least as long as your IP pays its electricity bills.
Tim,
What an insightful comment on stuttering and the value of concise communication. I'm glad that I read it.
These were both incredibly moving stories, Patrick's especially. They were also bizarre, in a metaphysical sense.
I always like having something to listen to when I do chores, so often I will find a long article on the Internet and then highlight it and turn on text-to-speech. Patrick's story about the meeting was already a powerful account, but it reached a whole other level when I misunderstood a sentence and had to go over and check what it said. The sentence was: "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.'"
After that, the rest of the article was almost ethereal; Roger's suggestion of using Alex's voice on a MacBook (exactly what I am using) literally made me shudder. I have a slight speech impediment, and I am always aware of how annoyed people are getting when conversing with me, as much as they try to assure me all is well. I knew this article would hit close to home, but adding the text-to-speech aspect made it feel like it was written specifically for this one situation.
This was probably the most intellectually stimulating laundry-folding adventure I have ever experienced. I feel I should take up sign language again.
Tim,
thank you for your summation of stuttering. There is someone who sits behind me in a Phil class who stutters. When he comments in class, I cock my head to show that I am listening attentively, for what it's worth. Maybe I'm being too polite? I often wonder how to best act to make people different from me feel comfortable--not just with conditions or maladies, but people with different height, gender, race...
Why I write this? Well, your comment was as interesting as those by Patrick and Roger; I have never thought that people who stutter are mentally retarded, but hearing them speak, and then reading what they can write presents an interesting foil--very stark. An inability to communicate would suck pretty bad. I read that 90% of criminals have a hard time communicating. Not that I think people who stutter are included in this group, I just imagine it would be frustrating.
Posting a comment on a Roger Ebert blog entry is as good a way as any other way online to reach an audience, so thanks again.
And Roger, you done it agin! Thanks!
I see this year we have computer games that work without controllers--you move and the machine follows you. Is that right?
Then why not lip-reading software? Maybe an iPad with a camera on it, backward, so that you "speak" to the camera while the words appear on the screen facing your audience. That would be no worse than movie subtitles, eh? Maybe you would put a finger to your lips when you wanted to emphasize a word. Or use your fingers somehow as a substitute for your tongue. Or shut your eyes for emphasis.
I haven't read all these comments. Maybe somebody thought of this.
I'm a big fan of Dragon Naturally Speaking but you folks need something else. Solving your problem could lead *somebody* to develop a new industry. (I'm *typing* on an iPad.) I know a little about interactive voice recognition technology (do they still call it that?), the principles, the options and techniques. Now with iPods and such, there must be a way....
P.S., I am a technical writer, age 63 and so I think about these things a lot these days. I'd also like to say that Roger Ebert is the best nonfiction writer I can name. I really envy his style.
Good luck to you both.
== PT
Random, but,
Are you able to speak when you dream?
Ebert: Eloquently.
Following up on my previous suggestion regarding the Plover open source stenography program, I downloaded it myself and tried unsuccessfully to install it on my MacBook Pro. Right now it seems that it only works on computers running the Debian distro of Linux. There is a program called VirtualBox that would make it possible for you to install and run Debian on a your Mac. It's a little more complicated to set up and use than the usual Mac experience, but if you're interested in trying it under those conditions, I know some techies in the Chicago area who could help you get set up. In the meantime, I'm fairly interested in learning steno myself, so I'm corresponding with the Plover developers to see if they can put together a protocol that will make it easier to run the software directly on the Mac without needing VirtualBox.
Software installation issues aside, I should note that even if Roger or Pat get the software running, there would be a fairly significant learning curve needed to get up to speed as a stenotypist. According to the Plover website, it is possible to get up to 100 words per minute with about six months of study and practice, but it would take a year or more to get into the 200 wpm range that would enable you to keep up with spoken conversations. I don't want to pour cold water on my own suggestion, but I thought I should also inject a note of realism. Even in the best of scenarios, Roger is right to recognize the importance of acceptance.
Ebert: In his area, I don't feel like an early adapter.
The more you use steno, the faster you get; it's very much like learning to type. I was able to get from 0 to 225 WPM in a year and a half, but I outstripped my qwerty speed in just months. It's also far less tiring than qwerty, and mistakes are easier to correct, because everything is grouped by syllable instead of by individual letter. I tried posting a comment last night, but it didn't go through, so I figured I'd try again:
I've made a video demonstrating Plover's text-to-speech capabilities, and I think it's pretty cool. You can view it here: http://plover.stenoknight.com/2010/12/plover-espeak-conversational-realtime.html
"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."
Truth this.
I'm glad you're here and writing. love, Val
Dear Roger and Patrick,
Please forgive my English, I am a Hungarian.
A speech specialist could help you to sign better, and Patrick to swallow, eat and drink.
I also recommend ASL, even if you have the fear you are falsely seen deaf, and cann't say the truth. Why are you interested in the opinion of the unknown people on the street? The deaf usually form silent words with their lips when they are signing. If you don't do this, the signer recognize your muteness, and your interpreter on the event can tell the truth to the other.
Would you enough good to regard the Muteness article in the Wikipedia? It is awful.
Merry Christmast despite of the desperate lonleliness
Anna
kukudasailv is a man
Review of Roger Ebert's "Trying to Get a Word in Edgewise"
by Robert Dorrell Speech & Communication Class Instructor: Randy Mayeux
When we consider the majority of people, who we individually make a difference to, isn't it ironic, that we never meet them? In Roger Ebert's blog, he speaks of a sense of frustration and ineffectiveness over losing his ability to speak, yet in his writing he conveys not only this personal disclosure but correspondence he received by e-mail from his friend who also lost their ability to speak, and in his writing, those identifiable feelings have been inspirational to me.
Roger Ebert is famous, around the world; for writings in the Chicago Sun Times and for his television reviews of movies. In this blog, where he 'can't get a word in edgewise', Roger suggests to his friend that they each accept "what it is" as a reality without a familiar future, the condition they share as an end, to a life of recognizable opportunity. Isn't it humanistic that we choose self pity over action?
I certainly enjoyed reading the article and I felt inspired by each Mr. Ebert and by the e-mail sent from his friend. They each illustrate, in their CO-misery, how easy it is for anyone beset with adversity, to wind up bitter rather than better.
'Fifty years of writing made one thing clear to Mr.Ebert, he says, that was to focus on the topic and expedite a result.' Here, for each individual, the focus is on a loss of audible communication; it was once easy and quick to vocally declare his feelings, but now, dependent on writing, they each express doubt in their ability to communicate. Certainly each of these individuals are lucky to have the education and intelligence to be able to clearly communicate in their writing.
For some reason Mr. Ebert appears to be oblivious to the obvious. Although Roger's friend seems more cognizant, what doesn't seem noticed by either of these men, is their opportunity to communicate to every segment of our population, the value held within those who have difficulty expressing themselves. Everyone has something to share with each person they come in contact with; and that continues from birth to death for each of us.
The article, "Trying to get a Word in Edgewise", illustrates the reluctance those who are not handicapped have towards communicating with those who are. The notion of learning from someone who cannot speak may seem far fetched to some, yet we each learn by reading and it doesn't matter if the writer can speak or not. To learn from a blind person, sounds foreign to some, yet their perspective is more considerate than most of those who are not blind. One of the greatest minds living today is Steven Hawkins, a man who can hardly speak or move.
The sort of world we live in is well exemplified by Mr.Ebert's article, in that each of us seem content to condemn the very opportunities which surround us as not good enough, when in fact opportunity is always close at hand and what we make of it is what makes the difference. Feeling lonely?, get involved!, with what is of interest to you, do something! The biggest affect of an individual's actions, is the sum of what happens indirectly from those actions, this is classic cosmology.
I am a better man, for reading this blog by Mr. Ebert. He and his friend, have truly been an inspiration to me. The next time, I come in contact with someone who can't speak or one who is otherwise handicapped, I am going to make a concerted effort to learn what that person has to share with me. Now I realize more of the great effort they are making, surely this reflects what they have to share with me.
I know that life doesn't pass anyone by, I realize it is the individual who passes by on life. I hope Roger and his friend aren't about to pass by on life. I know each day prepares me for the next, and that the lesson presented for me to learn, is one so that I can be more effective, so that my life can be more than what it was the day before. I hope Roger and his friend know this, too.
What I have realized, by reading his blog, is that cancer, something which could kill me, happens so that I, can learn to be more than what I was. So as to have a greater affect and be more effectual than I was before; but my paradigm must shift. When my world has changed, so must my perceptions of it, in order for me to see all that I can be. I know of no one, whose voice carries as far as Roger's, even today.
We should never underestimate why we are here, at this time, and on this planet. Wake up Roger, there are still roses to smell and stories to tell, and plenty of us waiting to hear, what you are writing about!
"Thank You", to Roger and to his friend, they have each made a difference to me; Another person, neither is likely to meet.
December, 2010
Ebert: Good gravy! You wrote a class paper about me and I'm still having nightmares about not getting my own in on time?
Mr. Ebert, I don't know if it's been suggested to you yet, but I read of this interesting iPad app and thought of you.
http://www.tuaw.com/2010/12/29/verbalvictor-app-gives-a-voice-to-those-who-cant-speak/
While the genesis of this app differs from your situation I thought an app similar to this may be of great interest. I imagine an app you could configure with different buttons that when touched would playback snippets of your voice. As you had mentioned a while back CereProc and the work they're doing. Imagine a combination of the technology!
Now you just need someway to be louder than everyone else in the room! :-)
Dear Robert & Patrick,
Thank you for this. I have lived with chronic illness most of my life and as a psychologist do what I can to help people with chronic illness make the most of their lives. Your pain and anguish comes through this post, as well as your integrity and quality of character.
Acceptance, yes. Defeat, no. What is the difference between the two? I am not sure how to describe it but most of us know it when we feel it. Especially those of us who are living with the aftermath of illness or trauma.
I do know that the difference between nurturing acceptance while defending against defeat is important in how we stay engaged in life. Sometimes it is the difference between natural grief and the pathology of depression. Sometimes it's the reality of being alone as opposed to the danger of becoming isolated. Sometimes the difference is having just one person 'get it.' I do hope I am making sense here; the emotions raised by your article makes it hard to be clear of thought.
Acceptance goes two ways, doesn't it? Acceptance, in the form of patience, could be exercised more by all of us in the presence of someone who does not have the same abilities as we do, whether they are of speech, thought, or physical strength.
About 7 years ago, I had a stroke and lost the ability to speak, as well as the ability to write. I remember my greatest worry at the time was that I had no way of letting people know that I was IN here. I heard them and understood what they were saying. That my brain was still here.
However I never allowed myself to seriously think that the situation would be permanent (even though my father stood at my hospital bed and asked the neurologist, "Will she always be like this?" right in front of me.) To be honest, I guess that was a frightening enough thought that I wouldn't allow myself to think it.
Through extensive speech (with a wonderful and devoted therapist) and occupational therapy, I have regained my speech, as well as recognition of the alphabet. However I remain, and always will remain, somewhat aphasic. So I know well the frustration, annoyance, and even sometimes outrage of sitting helplessly by while someone (usually erroneously) rushes to finish my thoughts for me. I find my aphasia tends to rear its ugly head more often when I'm trying to communicate with someone I don't know. (Probably because people that do know me, and my history, allow me the time it takes.) I tend to excuse myself and offer, "I'm sorry, I've had a stroke." And I always want to positively HUG those people that respond with a quiet smile and say, "That's okay, take your time."
And, as a result of that I, like you Roger, tend to "dial down" in social settings and just enjoy listening to the conversations around me, instead of attempting to be a part of them. I've also found that I'm much more isolated than I was before, but -- being an introvert -- I guess that's not as much of a problem for me as it might be for extroverts.
So while I don't know what it is to accept the fact that I'll never speak again, ever, I do have a little bit of understanding when it comes to the frustration and impatience with my own body at being unable to verbally communicate well. And the necessity to acknowledge the fact that this is as good as it will ever be again.
So for you, and Patrick, and others like you out there, please know there are some of us out here that will happily greet you (and your laptop or pad & pen or whatever) with a gentle smile and an unspoken "That's okay, take your time."
I'd like to reiterate Nora's comments above, but also add that if you do not choose ASL, you can also learn PSE, which is Pigeon Signed English. This mirrors the English language more than ASL, which is structured much differently than English. I write this as a child of two deaf parents. One who signed strictly PSE and the other who signed largely ASL. I also have a deaf uncle and aunt who were ASL signers. My mother signed PSE because she was an English Professor at Gallaudet University and felt that too many deaf people were losing essential skills in English grammar. In any case, both options are available to you and you might find that one is easier for you than the other. I'd agree with everyone else who has commented on this that it doesn't matter if you are the only one who knows sign language...a good interpreter can work in real-time to convey your thoughts whereas all the technology in the world will still leave you frustrated...and, I bet you'll find that those who love you will join in and learn sign language. It is a fun and rewarding language to learn with a relatively short learning curve to get going. All the best...Linda Jean
I am a 73 year old woman who grew up in parochial school and grew up idolizing you since the early PBS days. I am not as intelligent as you and so many of your readers who leave their comments. Neither am I educated....having left Catholic High School pregnant and soon was a single mother of six. I managed to put food on the table and shoes on their feet long before "women's re-entry'" help. I now reap the rewards of a wonderful grown family who spoil me daily. I want to say - tho - heartbroken by your physical troubles, I find it interesting that while not speaking aloud, you have managed by your writings, to speak more loudly than ever. I pray for you and yours. May you continue to give us pause to ponder. Thanks for everything over the years. I feel I am speaking for many of your fans.
Here's another technological path that might offer some potential to help with your frustration at not being able to participate fully in spoken conversations:
http://www.cnn.com/2011/TECH/innovation/01/05/swype.kushler/
Swype is an alternative typing technology designed for touch-screen mobile phones that supposedly can enable cell phone users to achieve typing speeds of 50+ words per minute. That is not a solution in itself for your situation. I think you'd want to find a way get up 150 wpm or more, and needing to type on a small device like a cell phone is not your fundamental problem.
In reading the article, however, I noticed that the inventor, Cliff Kushler, developed Swype through his long-standing interest in "computer engineering with a focus on disability communication" and that he previously invented Liberator, a "leading communication device for people who couldn't speak." It seems therefore that he has expertise and an interest in areas that could be helpful to you. It couldn't hurt to get in touch.
I think the main limitation to Plover, the stenotyping system that I mentioned previously, is the learning curve that would be required for you to get up to speed as a stenotypist. Whatever issues there are with installing the software on your Mac would probably be solvable within a week or a month at worst, so that in itself is not much of an issue. However, spending a year or more practicing to achieve steno speeds may well be more effort than you find worthwhile.
Kushler's Liberator system is described in the article as "a sort of shorthand with graphics and letters representing vocabulary words." It's possible, therefore, that he could set you up with a system which requires less learning effort than conventional stenotyping but still enables you achieve faster typing speeds.
So, how is the signing coming?
Best,
Scott
Roger and Patrick,
I think speech is greatly overrated. I don't mean to be insensitive. You've both become used to speech as a means of expression and a convenient tool. Still, speech is not necessary to live a good life, and a happy one.
Everyone deals with loss at some point in life. All those war veterans returning with permanent injuries, people who have lost loved ones -- whatever it may be. Your loss is speech.
On the other hand, I have found that I read your blog, Roger, with your own voice. I wonder what voice I would assign to it if I hadn't watched you on TV all those years. Perhaps like William Shatner barking out lines on the original Star Trek series...
If it helps at all, I've been deeply moved by pieces of writing, whether they've been novels or magazine articles or even letters and emails, but I'm rarely moved by a speech.
Best of luck to both of you.
I think speech is greatly overrated. I don't mean to be insensitive. You've both become used to speech as a means of expression and a convenient tool. Still, speech is not necessary
Speak is everything. Whether it's TSS or ASL or actual speech, it is what separates us from other animals. Speech, we are told, is God's gift alone to give. The Golem of Prague does not have speech. Nor does Frankenstein's monster. Nor does our older daughter, who has severe cerebral palsy and cannot speak.
Because of that she had been labeled as severely to profoundly mentally disabled. Just this past February the label was changed from Severe to Profound to Moderate to Severe. That means that the folks at CPS might think she has the intelligence of a ten year-old. This fall she is going to a high school that focuses on academics rather than one that focuses on vocational training.
This has taken a lot of my talking. A lot of my energy. Our daughter has an eight item talker now, but that does not really effectively allow her to take her place in society. If she could talk, she would work the room. Instead she watches the room. She laughs at the room. She has a wicked sense of humor. If people look in her eyes, they would hear her. They would see her "I don't suffer fools gladly" look.
Meanwhile I talk and talk and talk. Mainly on Twitter these days. I try to change attitudes of educators everywhere. Holmes said to Watson, "You see, Watson, but you do not observe." Doesn't take much to observe what our daughter is about. All one needs to do is look into those smoldering auburn eyes of hers. Until I get more educators to do that, I am going to continue to try and change attitudes.
I want to leave you with this video, In My Language made by an autistic woman for the purpose of making a statement about human rights for all.