When a person has a chronic illness, a disabling illness or condition, life becomes very difficult. Energy is limited. For a person who has Chronic Fatigue Syndrome (CFS), lack of energy is the problem. It's very difficult to explain to people why you can do this thing but not that thing. If you can do one thing, surely you can do it all? Well, yes. I can do 'anything', but not 'everything.' The Spoon Theory is a graphic illustration of just how that works. Devised by a woman with lupus, it applies to anyone else struggling with a disability. Abled-bodied people don't have any idea how time consuming and difficult it is to cope with a disability.
I make choices: I'm a terrible housekeeper because I'd rather do things like working as a sailor on a tall ship and read books. I wear the same clothes day after day because it minimizes the amount of laundry and simplifies the complex process of figuring out what to wear today. All my work pants are tan, and all my work shirts are blue or black. It's impossible not to be presentable if the options are eliminated. It's like wearing a uniform; you don't have to think anymore. Of course, self-expression, variety, and fun disappear, but that's a small price to pay for being able to get dressed decently and not have a crisis when I'm supposed to be getting ready for work. There are things more important to me than deciding what shirt to wear.
You can read about The Spoon Theory at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
I have also been listening to the CSFAC meeting on the Internet. Day One presents the science we already know, but having it all together in one place in digestible pieces is very handy. It certainly made an impact on some of the attendees -- the representatives from the CDC seems to finally be tuning in to what's been said for years. The committee also addressed the question of recommending the name be changed to ME/CFS, for myalgic encelphalitis/chronic fatigue syndrome in order to underscore the seriousness of the illness. As it was remarked, people don't take it seriously if you sound like you could have a problem that could be cured by taking a nap.
Also useful was the information on Day Two about how to document disability for a disability claims to the Social Security Administration and private disability insurance. Especially helpful were the exercise physiologists describing their tests and how they correlate to function and the evidence they use to make recommendations about level of activity. They also discussed how the great majority of work tolerance examinations do not follow any standardized procedures and are not based on evidence directly derived from the patient's actual condition. In other words, they are the opinions (or fantasies) of the examiner.
The videos can be viewed at: http://hhs.granicus.com/viewpublisher.php?view_id=5
Day Three has more procedural and political information about funding, etc, that is of less interest to patients, but probably useful to researchers and clinicians seeking resources.
Wednesday, October 20, 2010
Wednesday, October 13, 2010
Day Three, Kindle with Case
Monday I got my Kindle 3G as a gift from a fan (thank you very much). It came with a Kindle cover... on Tuesday. So, the two are now united and in operation. It hooked up easily enough. I like the built in light that comes with the case. It would be better if it rose a little higher, it does not shine evenly on the Kindle. In particular, it does a poor job of illuminating the keyboard and navigation keys. As mentioned previously, it's hard to see the teeny little keyboard and navigation keys as it is. It gives me a headache to squint enough to be able to make out the keys necessary to turn text to speech off and on. It's easier to cart the thing to a lamp than to make my eyes hurt trying to use the built in light. On the other hand, the light is adequate for reading the screen.
Reading my first book was tiring and frustrating. I was able to read it in one day, but it tires my brain sufficiently I must pace myself if I want to get anything else done on a given day. I think I must allocate a week with a little reading/listening each day to get through it. This is a vast improvement over six months to read the same thing in print.
I also mentioned that the entirety of Captain Blood is not on my Kindle. My first contact with customer support informed me that they would take care of the problem in 3-4 weeks. WEEKS. Yes, you read that right. They may get around to fixing it in a month. Today I was reading the manual in an effort to learn more about how my device works and found a troubleshooting tip: Delete the item, then redownload it from the archives. I did that. Still doesn't work. In fact, it's even worse. It opens to the blank end page and will not go anywhere else. Not even back to the page before it. So I have a blank page that says 100% -- and there is nothing else to be gotten out of the redownloaded page.
I have also found the USB cord. It's the power cable. The USB unplugs from the power cable. I wonder how long it will be before I lose the adapter... Having received a case custom made for the Kindle, you would think that it would include a pocket for the storage of the cable. It doesn't. Now maybe other people don't plan to recharge their Kindle when they travel, and maybe they never need to sync it with a computer. In short, maybe they have no need of a USB cable. I do. I also need earbuds so that I will be able to listen to the Kindle when I am aboard the ship and not disturb other people. No pocket for the earbuds, either. Shopping the Kindle Accessories page, I don't see any cases for earbuds or USB cables for sale.
Yesterday I started reading Candide. Within a few chapters my brain was tired. It was probably overly tired from having read Captain Blood and struggling with the Kindle and its various shortcomings. Thinking that perhaps some of the problem might be the malfunctions of my brain, I decided to read something familiar: my own novel.
To do so required transferring my copy of The Sallee Rovers from my iMac to the Kindle. This is not an obvious undertaking. Going online via my Mac, I was able to search for documentation and find that I need to email the Kindle edition of The Sallee Rovers from the Mac to an address they provide, with the possibility of a fee being charged if a conversion is necessary, which it's not.
You see, I have a Kindle version of my own book because the publisher gave me one. It's normal for publishers to give a copy of a book to the author. However, that means it's not part of my archive at Amazon.com. While I'm happy that Amazon.com is not squawking about my possession of an unregistered Kindle edition, it makes syncing the Kindle and the Mac a bit awkward. And slow. It takes a minimum of five minutes to transfer the file from my Mac to the Kindle six inches away. It's done by emailing it to your special personal Kindle email address. There may be some way to transfer directly, but I have not sussed it out yet.
The first impression of The Sallee Rovers being read by an artificial mechanical voice is that it sounds pretty good. My delivery is dead pan and the flatness of the artificial voice suits it. The humor in the writing style is more apparent as spoken by the artificial voice than in print, I think. I'm also pleased that the conversation sounds almost natural in spite of the artificial voice. That I have to take some credit for: Bishop sounds abrupt and Thorton sounds nervous. It's the patterns of their speech that makes it so, and hearing it out loud makes it obvious.
On the other hand, the Kindle does not pause after a closing quotation mark, thus conversational remarks run into each other. That makes it hard to tell who is speaking, and the difference between speech and narration. The Kindle's inability to process abbreviations correctly is disruptive also. 'Mr.' is constantly pronounced 'em-ar' not as 'mister.' When doing future books I shall eliminate as many abbreviations as possible so that it will be less disruptive when read aloud.
I want to learn how to code Kindle books myself. I suspect I could fix the flow by inserting white periods after closing quotation marks, for example. The white periods would be invisible on the page, but would force a pause by the coded voice. All the same, a pause after a closing quotation mark ought to be programmed into the text to speech software.
I was also driven crazy by the inconsistent pronunciation. It was hard to get used to hearing the Ajax constantly referred to as the 'I-yaks.' It may be the Greek pronunciation, but it isn't the English pronunciation, and I have always heard it as 'ay jacks' in English. I was therefore surprised and annoyed when the possessive was pronounced 'ay jack's'. Again, this is a defect in implementation. If you're going to go in and code manually to force a particular pronunciation, it should be consistent. Plurals and possessives are perfectly common parts of grammar and ought to be handled properly.
It also bugged me that 'below' is pronounced 'billow' and 'summon' is pronounced 'sum monn.' The artificial voice sounded Jamaican, mon. Effort should be put into making certain common words and abbreviations will be properly handled -- the average reader is going to have far more need of words like 'Mr.' and 'below' than 'Ajax' and 'forecastle.'
Listening to a story I knew very well I did not get as tired or frustrated. Because I knew the story I did not need to pause very often, although I did pause it at times so I could re-read the text in order to determine if there was a typo or it was a reading error by the reader. (One typo, the rest were device errors.) Fewer interruptions and less disruption made it enjoyable to listen to the story in spite of the minor annoyances.
Today I took the device with me while doing errands. That reveals a nice feature of the Kindle: you can listen to it even with the Kindle closed up in its case. Nice. I had the earbuds plugged in while I was a passenger in a car. I did not get motionsick, and that was a greatly appreciated feature. I cannot read in a car because I get carsick when reading. Now can enjoy books while traveling when I couldn't before. Big Kindle win.
It would be super nice if the Kindle would get friendly with car stereos like some mp3 players do. It would be spiffy to be able to plug the Kindle into the car to charge/use power, and it would also be nice to be able to put the sound through the car's sound system. Having used Apple earbuds, the sound quality was better in the earbuds than from the device's own speaker. My car speakers are pretty good too, I expect it would sound better through the car speakers than through the device's speaker. It's illegal to wear earbuds while driving, so if listening to the Kindle while driving, it means using its own speaker or the car's. I guess the claim of up to one month battery life is something I don't take seriously.
The battery life issue is important. I'm guessing that an active use of the machine, such as text to speech, uses up more energy than plain old silent reading. If the device is used to listen to music, that will use more battery too, as the documentation warns. The question is... how long? Ergo, my convulsive need to plug the thing in whenever possible, just to keep the battery up when I have no idea how long the battery will last.
Which brings up another annoyance: the battery indicator disappears. It starts off showing it, but as soon as the page is turned, it disappears. Therefore, if you're listening to a book you have no way to know how fast the battery is being used up. If you want to know, you have to pause text to speech. The battery indicator does not reappear. You have to press the home button and drop out of the book entirely. Then you can see the battery indicator. The same applies to the Wi-Fi and bars indicator and the book title. They, along with the battery indicator, are in the header. As soon as you turn the page... gone. This happens in plain text or in text to speech. Why on earth would you want to know how much battery life you had left, anyhow?
So, after three days with the Kindle: I like it. I'm frustrated by its shortcomings, but it does two things for me that make me happy: 1) It reads books so I can read a book in a week instead of needing six months for it, and 2) it lets me read in the car without getting carsick. These are two big wins to set against a horde of minor annoyances and general frustration.
~K~
Reading my first book was tiring and frustrating. I was able to read it in one day, but it tires my brain sufficiently I must pace myself if I want to get anything else done on a given day. I think I must allocate a week with a little reading/listening each day to get through it. This is a vast improvement over six months to read the same thing in print.
I also mentioned that the entirety of Captain Blood is not on my Kindle. My first contact with customer support informed me that they would take care of the problem in 3-4 weeks. WEEKS. Yes, you read that right. They may get around to fixing it in a month. Today I was reading the manual in an effort to learn more about how my device works and found a troubleshooting tip: Delete the item, then redownload it from the archives. I did that. Still doesn't work. In fact, it's even worse. It opens to the blank end page and will not go anywhere else. Not even back to the page before it. So I have a blank page that says 100% -- and there is nothing else to be gotten out of the redownloaded page.
I have also found the USB cord. It's the power cable. The USB unplugs from the power cable. I wonder how long it will be before I lose the adapter... Having received a case custom made for the Kindle, you would think that it would include a pocket for the storage of the cable. It doesn't. Now maybe other people don't plan to recharge their Kindle when they travel, and maybe they never need to sync it with a computer. In short, maybe they have no need of a USB cable. I do. I also need earbuds so that I will be able to listen to the Kindle when I am aboard the ship and not disturb other people. No pocket for the earbuds, either. Shopping the Kindle Accessories page, I don't see any cases for earbuds or USB cables for sale.
Yesterday I started reading Candide. Within a few chapters my brain was tired. It was probably overly tired from having read Captain Blood and struggling with the Kindle and its various shortcomings. Thinking that perhaps some of the problem might be the malfunctions of my brain, I decided to read something familiar: my own novel.
To do so required transferring my copy of The Sallee Rovers from my iMac to the Kindle. This is not an obvious undertaking. Going online via my Mac, I was able to search for documentation and find that I need to email the Kindle edition of The Sallee Rovers from the Mac to an address they provide, with the possibility of a fee being charged if a conversion is necessary, which it's not.
You see, I have a Kindle version of my own book because the publisher gave me one. It's normal for publishers to give a copy of a book to the author. However, that means it's not part of my archive at Amazon.com. While I'm happy that Amazon.com is not squawking about my possession of an unregistered Kindle edition, it makes syncing the Kindle and the Mac a bit awkward. And slow. It takes a minimum of five minutes to transfer the file from my Mac to the Kindle six inches away. It's done by emailing it to your special personal Kindle email address. There may be some way to transfer directly, but I have not sussed it out yet.
The first impression of The Sallee Rovers being read by an artificial mechanical voice is that it sounds pretty good. My delivery is dead pan and the flatness of the artificial voice suits it. The humor in the writing style is more apparent as spoken by the artificial voice than in print, I think. I'm also pleased that the conversation sounds almost natural in spite of the artificial voice. That I have to take some credit for: Bishop sounds abrupt and Thorton sounds nervous. It's the patterns of their speech that makes it so, and hearing it out loud makes it obvious.
On the other hand, the Kindle does not pause after a closing quotation mark, thus conversational remarks run into each other. That makes it hard to tell who is speaking, and the difference between speech and narration. The Kindle's inability to process abbreviations correctly is disruptive also. 'Mr.' is constantly pronounced 'em-ar' not as 'mister.' When doing future books I shall eliminate as many abbreviations as possible so that it will be less disruptive when read aloud.
I want to learn how to code Kindle books myself. I suspect I could fix the flow by inserting white periods after closing quotation marks, for example. The white periods would be invisible on the page, but would force a pause by the coded voice. All the same, a pause after a closing quotation mark ought to be programmed into the text to speech software.
I was also driven crazy by the inconsistent pronunciation. It was hard to get used to hearing the Ajax constantly referred to as the 'I-yaks.' It may be the Greek pronunciation, but it isn't the English pronunciation, and I have always heard it as 'ay jacks' in English. I was therefore surprised and annoyed when the possessive was pronounced 'ay jack's'. Again, this is a defect in implementation. If you're going to go in and code manually to force a particular pronunciation, it should be consistent. Plurals and possessives are perfectly common parts of grammar and ought to be handled properly.
It also bugged me that 'below' is pronounced 'billow' and 'summon' is pronounced 'sum monn.' The artificial voice sounded Jamaican, mon. Effort should be put into making certain common words and abbreviations will be properly handled -- the average reader is going to have far more need of words like 'Mr.' and 'below' than 'Ajax' and 'forecastle.'
Listening to a story I knew very well I did not get as tired or frustrated. Because I knew the story I did not need to pause very often, although I did pause it at times so I could re-read the text in order to determine if there was a typo or it was a reading error by the reader. (One typo, the rest were device errors.) Fewer interruptions and less disruption made it enjoyable to listen to the story in spite of the minor annoyances.
Today I took the device with me while doing errands. That reveals a nice feature of the Kindle: you can listen to it even with the Kindle closed up in its case. Nice. I had the earbuds plugged in while I was a passenger in a car. I did not get motionsick, and that was a greatly appreciated feature. I cannot read in a car because I get carsick when reading. Now can enjoy books while traveling when I couldn't before. Big Kindle win.
It would be super nice if the Kindle would get friendly with car stereos like some mp3 players do. It would be spiffy to be able to plug the Kindle into the car to charge/use power, and it would also be nice to be able to put the sound through the car's sound system. Having used Apple earbuds, the sound quality was better in the earbuds than from the device's own speaker. My car speakers are pretty good too, I expect it would sound better through the car speakers than through the device's speaker. It's illegal to wear earbuds while driving, so if listening to the Kindle while driving, it means using its own speaker or the car's. I guess the claim of up to one month battery life is something I don't take seriously.
The battery life issue is important. I'm guessing that an active use of the machine, such as text to speech, uses up more energy than plain old silent reading. If the device is used to listen to music, that will use more battery too, as the documentation warns. The question is... how long? Ergo, my convulsive need to plug the thing in whenever possible, just to keep the battery up when I have no idea how long the battery will last.
Which brings up another annoyance: the battery indicator disappears. It starts off showing it, but as soon as the page is turned, it disappears. Therefore, if you're listening to a book you have no way to know how fast the battery is being used up. If you want to know, you have to pause text to speech. The battery indicator does not reappear. You have to press the home button and drop out of the book entirely. Then you can see the battery indicator. The same applies to the Wi-Fi and bars indicator and the book title. They, along with the battery indicator, are in the header. As soon as you turn the page... gone. This happens in plain text or in text to speech. Why on earth would you want to know how much battery life you had left, anyhow?
So, after three days with the Kindle: I like it. I'm frustrated by its shortcomings, but it does two things for me that make me happy: 1) It reads books so I can read a book in a week instead of needing six months for it, and 2) it lets me read in the car without getting carsick. These are two big wins to set against a horde of minor annoyances and general frustration.
~K~
Saturday, October 09, 2010
Tom Wisner, Bard of the Chesapeake
I have only just now learned that Tom Wisner, the Bard of the Chesapeake Bay has passed away. Daddy Art, that is to say, Captain Art Daniels delivered the eulogy.
It is always sad to see a piece of the Chesapeake's history and culture pass away, but I am sadder still that this is old news and I have only just now heard it. That's what comes of committing the disloyalty of spending my year on the Delaware side of the world, crewing the Kalmar Nyckel and her boat, the Little Key. I have never been homesick for any place in the world, but I am surely homesick for skipjacks. Finding out that I missed something important has made me miss the Chesapeake even more.
Tom used to go around to festivals on the Chesapeake Bay and I saw him perform a few years ago at the Havre de Grace Maritime Museum, if memory serves me correctly. I was also thinking I would see him again, because Erik Spangler is composing a 'Watershed Sound Poem' that includes some of my poetry from Heron Sea along with some of Tom's work and other local artists and sounds. Watershed Sound Poem has an estimated time of arrival next spring. I am hoping to be able to attend its performance, which will be even more poignant if it includes Tom's work.
In Japanese aesthetics there is a quality called 'aware', pronounced ah-wah-ray, which is translated as 'the pity of things,' or an awareness of the perishable of the world. I encountered this Japanese aesthetic principle as a teenager, thanks to the Japanese exchange student we had, and was immediately and deeply immersed in Japanophilia for several decades. 'Aware' impressed me deeply and has provided me with a melancholy but not depressing way to view the world and to prize its fragile beauty. It also introduced me to the classical tanka of the Kokinshu and Shinkokinshu eras -- when I was homeless, Carter's Traditional Japanese Poetry was one of the items I managed to retain possession of.
It was not until many years later that I wrote tanka and found in the 'aware' of Japan a way of viewing the world that was a perfect match for the fragile beauty of the Chesapeake. There is a numinous quality in both tanka and the Chesapeake, so it would not surprise me if some Japanese pilgrim erected a Shinto gate in the shallow waters of the bay. It would have to be painted blue if they did, because blue is the traditional color for offerings given to the god of the Chesapeake by the Indians who lived here. Boats are never painted blue here because if you do, the god of the Chesapeake will accept the gift and pull it under.
I am currently serving aboard a big blue ship, the Kalmar Nyckel, a reproduction of a 17th century vessel that was used to bring Swedish settlers to the Delaware Bay. When I have been aboard her going along the Chesapeake Bay, I often reflect on these matters, and I expect I will reflect again when she goes to the Chestertown Downrigging Weekend. Chestertown, Maryland, was the site of the Chestertown Tea Party during the American Revolution, and there is nothing more beautiful that a dozen or more historic and wooden ships and boats cozy together as October ends with a crazy Halloween party.
It is always sad to see a piece of the Chesapeake's history and culture pass away, but I am sadder still that this is old news and I have only just now heard it. That's what comes of committing the disloyalty of spending my year on the Delaware side of the world, crewing the Kalmar Nyckel and her boat, the Little Key. I have never been homesick for any place in the world, but I am surely homesick for skipjacks. Finding out that I missed something important has made me miss the Chesapeake even more.
Tom used to go around to festivals on the Chesapeake Bay and I saw him perform a few years ago at the Havre de Grace Maritime Museum, if memory serves me correctly. I was also thinking I would see him again, because Erik Spangler is composing a 'Watershed Sound Poem' that includes some of my poetry from Heron Sea along with some of Tom's work and other local artists and sounds. Watershed Sound Poem has an estimated time of arrival next spring. I am hoping to be able to attend its performance, which will be even more poignant if it includes Tom's work.
In Japanese aesthetics there is a quality called 'aware', pronounced ah-wah-ray, which is translated as 'the pity of things,' or an awareness of the perishable of the world. I encountered this Japanese aesthetic principle as a teenager, thanks to the Japanese exchange student we had, and was immediately and deeply immersed in Japanophilia for several decades. 'Aware' impressed me deeply and has provided me with a melancholy but not depressing way to view the world and to prize its fragile beauty. It also introduced me to the classical tanka of the Kokinshu and Shinkokinshu eras -- when I was homeless, Carter's Traditional Japanese Poetry was one of the items I managed to retain possession of.
It was not until many years later that I wrote tanka and found in the 'aware' of Japan a way of viewing the world that was a perfect match for the fragile beauty of the Chesapeake. There is a numinous quality in both tanka and the Chesapeake, so it would not surprise me if some Japanese pilgrim erected a Shinto gate in the shallow waters of the bay. It would have to be painted blue if they did, because blue is the traditional color for offerings given to the god of the Chesapeake by the Indians who lived here. Boats are never painted blue here because if you do, the god of the Chesapeake will accept the gift and pull it under.
I am currently serving aboard a big blue ship, the Kalmar Nyckel, a reproduction of a 17th century vessel that was used to bring Swedish settlers to the Delaware Bay. When I have been aboard her going along the Chesapeake Bay, I often reflect on these matters, and I expect I will reflect again when she goes to the Chestertown Downrigging Weekend. Chestertown, Maryland, was the site of the Chestertown Tea Party during the American Revolution, and there is nothing more beautiful that a dozen or more historic and wooden ships and boats cozy together as October ends with a crazy Halloween party.
I keep
the ship's cat
company
at three am
on a Cape Cod night
I am glad to be home again.
~K~
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