I slept in today. I have worked 109 hours in the last two weeks and I've had laryngitis for longer than that. I don't know if laryngitis is always the result of infection, or if it can be a functional thing. Anyway it seems to make me tired in a way. Talking is certainly a lot more effort than it ought to be, especially considering that a large part of my job is carrying on conversatrions with Gloria, conversatrions that can go on a very long time as she struggles to understand and be understood.
So I guess the good thing is that I have written a couple thousand words on Afterwar this week, and transcribed a thousand or so of The Donor. I also solved an incluing problem. Usually I like to have the internal evidence of the text itself establish the timeline for the reader but I was pretty sure that the chronology of Afterwar is too complicated for that, since the chapters are not presented in chronological order and there's a torrent of people and events and the grand march of history interacting with the small details of individual lives. So I have done a simple thing: I have given each chapter a subhead that places it in relative time. The first chapter is twenty-five years after the General Accords: the second chapter is twenty-five years before the General Accords. It makes me happy. I think I opriginally rejected this sort of thing, but I think that was before I munged the chronology as much as I have now.
THe Book of Gloria is starting to take shape. I am printing out pages with photographs mostly featuring Gloria doing things and going places, each labelled. I have written on some of the pages the names of objects she might be looking for, such as "pink sweater." Every day or so I print out two to five more pages. Each page is a coherent whole, and they're roughly prganized into pages about friends and family, pages about activities mostly around the house, pages about places to go, pages about things she might want or need, and pages about animals and flowers she might want to talk about.
The report on primary progressive aphasia is very big on simplifying: simplifying the space (throwing things out), simplifying activities, simplifying conversations. Good enough advice, but I get the impression that the level of simplifying they're thinking of is greater than Gloria needs, wants, or can benefit from. The examples of simplifying conversation that they give are the stupid dop-away-with clauses, conjunctions, and relational adjectives I sometimes see advocated as the way to make reading material easier for younger readers and English language learners. And that's stupid, because it makes the language unintelliglible, since it destroys the relationship between one item or action and the others. What I have been doing is limiting the number of pieces in a sentence -- two or three is fine, you can include the relationship words, making the sentence intelligible, without going on too long and losing her before she gets to the end. Something to bear in mind is that this is an intellectual, who taught high school English, followed current events and developments in science and the arts, wrote ironic poetry, and wrote essays in French. So, while she has lost a lot of language and some thinking tools that are dependent on language and is constantly struggling, usually somewhat confused, often overwhelmed, and sometimes exhausted, she's not stupid and she's not incapable of understanding things or drawing reasonable conclusions about things. She has a very soft, girlish-old-lady way of speaking, which makes it hard sometimes to realize that she's saying something intelligent behind all the word glitches. But I get to focus on her and I get to take the time to work out what she's trying to say, so I can usually get it. Or close to it, anyway.
So the kind of book that the report suggests is very minimal, with just common wants pictured so that the diminished old person can point to a banana or something and grunt "this! this!". If she lives long enough Gloria may be reduced to that. But I think in the immediate future she needs only a conversational prop and prompt, and that each picture can have more information than that. Or some of the pictures can anyway. The idea is not just to make her life easier and to make minimal communication possible, but to stimulate compensatory strategies by giving her what we used to call "scaffolding" in education. And to keep her talking -- "use it or lose it," they say, in other aging subjects.
Lately I've been wanting to talk to Oliver Sachs about it.
On other fronts, the nice fellow and three of his friends went up to the White Mountains and camped out just downslope from the bristlecone pines to watch the Perseid meteor shower. They first got to watch a lightning show for a few hours, and then they got the meteor shower. Rolfe told me about being up in the mountains when a meteor went past them and lit up the mountainside like a magnesium flare.
On still other fronts, my golden muscat grapes are almost ripe, and there's going to be too many of them, and I'm probably going to make raisins instead of wine (I might make wine, though)!
So I guess the good thing is that I have written a couple thousand words on Afterwar this week, and transcribed a thousand or so of The Donor. I also solved an incluing problem. Usually I like to have the internal evidence of the text itself establish the timeline for the reader but I was pretty sure that the chronology of Afterwar is too complicated for that, since the chapters are not presented in chronological order and there's a torrent of people and events and the grand march of history interacting with the small details of individual lives. So I have done a simple thing: I have given each chapter a subhead that places it in relative time. The first chapter is twenty-five years after the General Accords: the second chapter is twenty-five years before the General Accords. It makes me happy. I think I opriginally rejected this sort of thing, but I think that was before I munged the chronology as much as I have now.
THe Book of Gloria is starting to take shape. I am printing out pages with photographs mostly featuring Gloria doing things and going places, each labelled. I have written on some of the pages the names of objects she might be looking for, such as "pink sweater." Every day or so I print out two to five more pages. Each page is a coherent whole, and they're roughly prganized into pages about friends and family, pages about activities mostly around the house, pages about places to go, pages about things she might want or need, and pages about animals and flowers she might want to talk about.
The report on primary progressive aphasia is very big on simplifying: simplifying the space (throwing things out), simplifying activities, simplifying conversations. Good enough advice, but I get the impression that the level of simplifying they're thinking of is greater than Gloria needs, wants, or can benefit from. The examples of simplifying conversation that they give are the stupid dop-away-with clauses, conjunctions, and relational adjectives I sometimes see advocated as the way to make reading material easier for younger readers and English language learners. And that's stupid, because it makes the language unintelliglible, since it destroys the relationship between one item or action and the others. What I have been doing is limiting the number of pieces in a sentence -- two or three is fine, you can include the relationship words, making the sentence intelligible, without going on too long and losing her before she gets to the end. Something to bear in mind is that this is an intellectual, who taught high school English, followed current events and developments in science and the arts, wrote ironic poetry, and wrote essays in French. So, while she has lost a lot of language and some thinking tools that are dependent on language and is constantly struggling, usually somewhat confused, often overwhelmed, and sometimes exhausted, she's not stupid and she's not incapable of understanding things or drawing reasonable conclusions about things. She has a very soft, girlish-old-lady way of speaking, which makes it hard sometimes to realize that she's saying something intelligent behind all the word glitches. But I get to focus on her and I get to take the time to work out what she's trying to say, so I can usually get it. Or close to it, anyway.
So the kind of book that the report suggests is very minimal, with just common wants pictured so that the diminished old person can point to a banana or something and grunt "this! this!". If she lives long enough Gloria may be reduced to that. But I think in the immediate future she needs only a conversational prop and prompt, and that each picture can have more information than that. Or some of the pictures can anyway. The idea is not just to make her life easier and to make minimal communication possible, but to stimulate compensatory strategies by giving her what we used to call "scaffolding" in education. And to keep her talking -- "use it or lose it," they say, in other aging subjects.
Lately I've been wanting to talk to Oliver Sachs about it.
On other fronts, the nice fellow and three of his friends went up to the White Mountains and camped out just downslope from the bristlecone pines to watch the Perseid meteor shower. They first got to watch a lightning show for a few hours, and then they got the meteor shower. Rolfe told me about being up in the mountains when a meteor went past them and lit up the mountainside like a magnesium flare.
On still other fronts, my golden muscat grapes are almost ripe, and there's going to be too many of them, and I'm probably going to make raisins instead of wine (I might make wine, though)!