Bareit Is Ready for His Close-Up

I dithered about posting a link to the video the King County Library System made about how people (being, specifically, Scarecrow and me) use their library. However illusory the veil of Internet anonymity might be, I still find myself clinging to it. KCLS will probably make the video available from their website at some point anyway, but that’s OK because, really, how many people will find it there? Then I figured, what the heck? How many people will find it here?

The whippets, who have never been to the library and can’t even read, pretty much stole the show anyway. As you can imagine, there’s no living with them now.

Edited 12 March 2013, to remove the link to the video on Scarecrow's Facebook page, which was apparently protected by Facebook's privacy controls. (Facebook has privacy controls? Who knew?) Anyway, I'll post a functional link if/when KCLS makes it available from their website. If you'd like a preview, it's here, in PC and Mac format:

http://cardinalmedia.com/cardshares/KCLS-Symphony/

Edited some more on 17 March 2013, because I noticed the above link wasn't actually a link. Duh. I know you know how to get there anyway, but I try to be considerate about things like that.

What I Should've Said

I can never think of the thing I should’ve said when I should’ve said it. Only when the moment is long past – when the conversation has moved on to other things, or when I wake up at 3 AM – do I finally come up with what I really should’ve said. Sometimes it’s days or weeks later. Years, sometimes. Decades, even.

I’m not after the clever comeback, here; I’ve never been a master of Quick Wit and Retort, and my expectations are not unreasonable. I just mean what I would like to have said if I could think a little faster and was a little better at putting thoughts into words. Pathetic, really, for someone who has always made a living, one way or another, with words, but there it is.

Just now, for example, I’m finally coming up with what I should’ve said last Friday. Like I said, quick wit is not one of my strengths.

What happened was this: Scarecrow reconnected on Facebook with a woman who went to the same high school in Florida. Turns out she’s now in the Seattle area, and works in Community Relations and Marketing for our local library. Scarecrow pipes up with how great a resource the library is for me/us. Turns out they’re putting together a series of videos about the library, and she wondered if they might talk to us about it.

There are many reasons for me not to do this:

• I generally don’t like to make a deal of being disabled
• I definitely don’t do “courageous” or “inspirational”
• I don’t much like having my picture taken
• I’m uncomfortable being the center of attention

And most importantly:

• When you’re talking, it’s always a first draft

On the other hand, this is the library we’re talking about. If there’s something I can do to help, I’m in. So OK.

So. Last Friday the library lady (I’ll call her Spike) comes to our house with a director, a tech/camera/sound guy, an assistant tech/camera/sound guy, and a whole bunch of equipment. Everybody was very nice, and fortunately they were all dog people, because the whippets were going ballistic. (We always say they normally have better manners, but I don’t think anyone ever believes us. Which is just as well, because they don’t.) The tech guys fixed us up with cool wireless mics, pointed the cameras our way, and we talked about the library and stuff. Although I felt like a total moron, I thought Scarecrow actually sounded pretty good, and overall it was not as agonizing as I had feared. Part of the reason was that they probably spent as much time taking pictures of the dogs as they did of us, and the dogs expressed themselves more coherently.

I’ve had a week to cringe at some of the stupider things I said. Although I don’t get to do the editing myself, I can only hope that the worst bits vanish forever into pixel never-never-land.

I can spend the next decade working out What I Should’ve Said.

How Much Does an E-Book Weigh?

As grateful as I am that e-books became widely available just about the time I began to have trouble managing regular physical books, some e-book features require this elderly canine to attempt some new tricks.

I've been reading regular books for a long time, you understand, and I'm pretty well accustomed to that way of doing things. For example, just about any e-reader gives you some way to tell how much progress you've made through the book, and while I know the slider bar on the edge of the screen (or whatever) is conveying that information, it is not (yet) as intuitive as comparing the difference in thickness between the pages on the left side of the open book with the thickness of the pages on the right.

I also seem to have a heck of a time remembering to note how many pages are in an e-book. With physical books, it's obvious, isn't it? The breadth of the spine, the weight when you pick it up — it's not something you have to remind yourself to do. E-books, on the other hand, all look pretty much the same. It was only after I got started onCryptonomicon (Neal Stephenson) that I noticed that turning virtual pages seemed to have remarkably little effect on the position of the slider bar at the edge of the window. I guess it wouldn't. Turns out the darned thing is 1168 pages long, although admittedly that includes what they call "e-book extras".

If I'd been paying attention, I would've realized that I didn't need to check out any other books at the same time; particularly not The Game of Thrones (George R.R. Martin, 835 pages) and The Wind-Up Bird Chronicle (Haruki Murakami, 640 pages). The Game of Thrones returned itself to the library when I was part way through it, thoughtfully sparing me any overdue fines. I had to put it back on hold, and I'm waiting for my name to get back to the top of the list.

Format aside, I guess it's a good sign when you finish a really long book, and would look for other books by the same author. Cryptonomicon is something of a classic in its genre, and deservedly so. Parallel storylines, engagingly geeky characters, elements of the theory and history of cryptology — it took me a while to get into it, but it was a lot more fun than I expected.

The Wind-Up Bird Chronicle… not so much. My English-major daughter recommended the author, so I expected it to be challenging. Opaque was more like it.

Just because I knew you'd want my opinion.

The e-Library

The thing I really like about checking an ebook out of the library is that when it's due, it just goes away. No pestering Scarecrow to return it, no overdue fines, nothing like that. I'm ashamed to admit that it's saved me a chunk of change. This is a very fine thing.

The thing I really don't like about checking an ebook out of the library is that when it's due, it just goes away. Even if I'm part way through and really want to finish it and I can't renew it because I know there are holds on it so I know this is evil but I want to just pay the fine and hang onto it for an extra day. Or maybe two. But I can't. When it's due, it just goes away. I have to put another hold on it and get back in line. By the time I can check it out again, I'll have forgotten where I left off.

On the bright side, if you'd call it that, by the time I can check it out again, it'll be like a brand-new book. I must've liked it, because I wanted to finish it. So there's that. I don't know that my pathetic reading retention is an MS thing. I'm more inclined to think it's an easily distracted old lady thing. In either event, I can reread my favorite books, and enjoy them all over again. I can even reread mysteries, and not remember who done it. It's a silver lining type of thing.

Also, getting back to ebooks, the whippets have yet to come up with a way to chew them up. It's not that they're all that bad about chewing up books. They've only totally decimated one hardback, and nibbled around the edges of a couple of paperbacks. The commute to Scarecrow's new job way down at the other end of town makes for a long day for them to be all alone, poor dears. Of course the paperbacks were ours. The hardback was a library book.

Where was I going with this?

In a comment on an earlier post, which I know I should respond to but rarely do, Donna at Arranging Shoes wanted to know how I manage the reading thing anyway. Here's the scoop.

I used to use the eraser end of a pencil to turn pages on a real paper book. Sometimes, at a good time, on a good day, with a cooperative book, I can still do that. Sometimes I have to ask Scarecrow to turn pages for me, and amazingly, sometimes he's willing to interrupt what he's doing every minute and a half to do that. I've got to say that struggling to turn a page, or having to ask someone to turn it for me and waiting while they do that, does not do good things for my reading comprehension. Yeah I know, excuses, excuses. But some books just aren't available in a digital format, and won't be anytime soon. You do what you gotta do.

For digital books, I really like the whole eReader idea. Books and gadgets – what's not to like? I wish I still had enough manual dexterity to hold one and make it go, but I don't.

Audio books can be nice, especially when they're read by somebody good. My problem with them is that when I'm distracted, or stop paying attention, or fall asleep, the reader goes merrily on without me. Finding where I left off has not been easy. With a real paper book, or even an ebook, I can always pick it up where I stopped turning pages.

So mostly I read ebooks on my laptop. And wait to get to the top of the library hold queue.

The Odd-Fish

"As an Odd-Fish, it is not my job to be right", said Sir Oort. "It is my job to be wrong in new and exciting ways."
-- James Kennedy, The Order of Odd-Fish

I need to read this book. I don't know anything else about it, but I obviously need to read it. I mean, really, how could I not? I've never heard of an Odd-Fish, but Sir Oort is obviously talking about me.

So many books, so little time.

The problem with sites like goodreads.com, and with the King County Library System online catalog for that matter, is that there are so many books! I can spend hours browsing, hopelessly adding even more books to my already hopelessly long list of things to read, using time I could spend reading to make an already hopeless problem even worse. Clever, no?

So I have a gloomy afternoon with nothing much else going on. I think I'll spend it making my Books to Read list a few pages shorter.

Gloria's Books and Adult Day Care Center

Yesterday Scarecrow started his new job at Gloria's Books and Adult Day Care Center. It's exactly like his previous job at Bob's Books and Adult Day Care Center, except it's more than twice as far away, in the other direction. Bob even works at the new place. It was just like they never left. Bob even wiped out an entire database, and threw away the backup tapes. Just like a normal day at Bob's Books. (Bob is the sweetest man you could imagine, but he belongs in a home for the technologically impaired.)

Just like the bizarre arrangement we developed at Bob's Books, I went in to work with Scarecrow. He helped me with lunch and bathroom breaks, as necessary. Elsewise, I just tried to stay out of the way.

I'm embarrassed at the lengths to which Gloria has gone to find a spot for me. She had obviously given it a lot of thought, and offered me a couple of choices. Choices! I'm happy to be allowed to sit in a corner, out of the way, and you're giving me choices? After a tour of the facility, we decided I would take up residence in a big empty room waaaaaaaaaaay at the other end of the (really big) warehouse. It's a veritable crip suite, as it's right across from an accessible bathroom, with nobody much else around. I heard a couple of people talking, but didn't see anyone else all day. I certainly don't feel like I'm under foot. There are no feet to be under. Feet under which to be. Whatever. I hooked up to the wireless 'net, and we're good to go. How cool is that?

My new hangout is, as I said, a big room with no windows, a warehouse-high ceiling, and concrete warehouse floor. It's warehouse temperature, which this time of year is still pretty brisk. It feels kind of like a bunker. Gloria brought in a rug for the concrete warehouse floor. Seriously. I can't believe this.

I wish I could still use binoculars. The warehouse backs up to a wetland, and I bet there are some good birds out there.

So, that's it. Who knew there were two book distributors in the greater Seattle area that would let an employee bring a disabled partner to work? Well I guess, as an old friend of mine used to say, 'You don't ask, you don't get.' We're in.

15 in 15

On Facebook (this is my penance for being one of those creepy moms who lurks on Facebook, spying on my kid) Tuffy tacked me on to a list of friends she challenged to come up with a list of books I've read that stuck with me; 15 books in 15 minutes. I usually hate these chain letter type quizzes, but this sounds like fun.

The rules: Don't take too long to think about it. Fifteen books you've read that stick with you. List the first fifteen you can recall in no more than fifteen minutes. Tag fifteen friends (or, if you're lazy like me, whichever number seems appropriate), including me, because I'm interested in seeing what books my friends choose. Do yours before you read anyone else's....

OK, here we go...

The Once and Future King, T. H. White
Sociobiology, E.O. Wilson
The Lone Ranger and Tonto Fistfight in Heaven, Sherman Alexie
The Panda's Thumb, Stephen Jay Gould
Horton Hatches the Egg, Dr. Seuss
Emma, Jane Austen
Small Gods, Terry Pratchett
Song of Solomon, Toni Morrison
The First Circle, Alexander Solzhenitsyn
Big Red, Jim Kjelgaard
Introduction to Population Genetics Theory, C.C. Li
The Elements of Style, Strunk and White
Angela's Ashes, Frank McCourt
Catch-22, Joseph Heller
Moby Dick, Herman Melville

I probably spent more than 15 minutes, but not a lot more. I'm kind of surprised at some of the things that bubbled up from my subconscious to wind up on the list. Some are books I haven't thought about in... decades. Big Red? Where did that come from? They're not all books I loved. For example, I had a love/hate relationship with Intro to Population Genetics Theory. And I definitely did not love Moby Dick. It was assigned in one of the few English classes I ever had to take. This was back at the dawn of time, you realize, but it really stuck with me. It really stuck with me. The book and the class about did me in. Tuffy, English major that she is, loved it.

I found it got easier to come up with books as I went along. By the time I got to the end, I was having to choose between books with equally valid claim to a place on the list. For some authors, it was hard to pick one book that stuck with me more than others. Sherman Alexie? Terry Pratchett? Stephen Jay Gould? Toni Morrison? If they wrote it, and I read it, it stuck with me.

Well, that was fun. Comparing my list to Tuffy's, I look like a troglodyte. I haven't even read most of the stuff on her list, and wouldn't be inclined to try. It looks like work.

Maybe that's why I wasn't an English major.

Forever Young

Why don't you ever hear anybody lamenting the fact that middle age is wasted on the middle-aged?

I just finished reading Best Love, Rosie by Nuala O'Faolain, a wonderful Irish writer with the coolest name I've ever heard. It's about a woman trying to figure out middle age. Being about there myself, it got me thinking.

I remember being startled the first time I heard a woman my age refer to herself as middle-aged. Wait... she's the same age I am. If she's middle-aged, that would mean... Really? Middle-aged? Me? How can this be?

I still feel young, which is clearly at odds with reality, and getting odder all the time. People must think of me as old. I've got gray hair, and creaky joints. I'm quadri-frackin'-plegic, for criminy sake. But I still think of myself as young. When does the inside catch up with the outside? Does it ever?

I don't think I'm particularly phobic about the prospect of getting old. I don't agonize over every line and wrinkle. In fact, I can't remember when I last looked in a mirror. I don't dye my hair. I wish I could do a lot of things that I can no longer do, but that's more an MS thing than a getting old thing.

I remember my grandmother saying, in her Yiddish accent, 'I'm getting younger and younger, every day.' I never really knew what she meant by that.

I still don't.

In the Middle of Everything

I suppose being in the middle of something, while not as emotionally satisfying and morally laudable as having finished, is better than not having started it yet.

Project: Come up with a different way to control my power chair before I'm trampled flat (again) by the Red Queen.

Status: Given that these projects always take longer than you expect, probably not as far along as I'd like to think. I spent the weekend trying out a loaner chair outfitted with a head array control. I decided it will eventually work better for me than a joystick, which is unfortunately not saying a great deal. The next step is to find out how much it might cost to outfit my current chair with such a thing. The first step in the next step is to meet with Mike the wheelchair guy again. We're doing that tonight.

Project: Arrange for backup/respite home care.

Status: I called up a couple of the places on the list of referrals we got from the MS society. We'll meet with one later this week, another early next week. I'm playing phone tag with a third place. I admit the thing that finally got me moving on this was that the last time I saw the Rehab Medicine guy, two months ago, I assured him I would take care of it. I've got an appointment with him on Wednesday. I find shame and humiliation to be very effective motivators. But hey, it's better than not having started it yet.

Project: Acquaint new pack member with the rudiments of civilized behavior.

Status: We're not there yet. For such a narrow dog, she's kind of a mooch at meal times. Her taste in literature, while enviably broad, apparently prompted her to devour a couple of Tuffy's books. Scarecrow found little doggy footprints in the kitchen sink this morning. But she's very sweet...

A Fluffy Gray Weekend

When the weather is like this, I try to think of the clouds as a soft, fluffy, gray blanket. That works pretty well through most of the winter, especially if you compare winter in Seattle to winter in Michigan.

Around this time of year, though, it starts to feel like a cold, wet, soggy gray blanket.

It even snowed for a few minutes, earlier today. What the heck?

It's looking like it will be a soft, fluffy, gray weekend. Fortunately, I've got a couple of books I've been meaning to read. I gave Scarecrow 'Unseen Academicals' by Terry Pratchett for winter solstice, and he finished it a while ago. I always try to give books I want to read to people who will loan them back to me when they're done. Am I clever, or what? Since Scarecrow and Tuffy are equally clever, we usually have a book trading round robin after every holiday. I've also got 'The Time Travelers Wife' by Audrey Niffenegger. I had it on hold at the library, but after three months I was all the way up to number 364 out of 493 on the hold list, and I got tired of waiting. I found a bargain paperback (I'm such a tightwad) and I was already paying shipping on Scarecrow's birthday present anyway, so what the heck. I get crazy like that sometimes. I don't think it's Scarecrow's kind of book, but Tuffy might like it.

I'm ready for soft, fluffy gray winter to turn into soft, fluffy gray spring. This is Seattle, after all.

The Library Shelf

Reading books is hard work these days. Turning pages can be a real struggle; by the time I manage it, I've lost track of the story. Flipping back to the previous page just ain't going to happen, so I forge ahead, but I'm always afraid I'm missing something. Paperbacks can be particularly tricky to handle, and let's face it, everything is paperback these days. Books in electronic format are a lot easier to read for the dexterity-challenged, but not everything is available as an e-book yet.

Besides, I like real books. I like the cover art, the texture of the paper, the design of the typeface, the layout of the page, the feel of it in my hands (I can't really feel much anymore, but I have a good memory, and a good imagination). I like being able to mark my place with a bookmark from Munro's books in Victoria, BC, or Jocundry's in East Lansing, Michigan (is Jocundry's still there, I wonder?), and see how many pages I have left to read. Sometimes it's just worth it, even if I need help turning pages. Fortunately for me, Scarecrow is willing to put up with a lot. Since he had some time off work over the holidays and was just hanging around the house, I took advantage of his willingness to do this.

I wasn't reading anything edifying or high-minded. I read for fun. I admit I don't often give books the amount of thought they deserve; I read the way most people watch TV. My library shelf is entertaining rather than impressive. I just finished Wolf Hall by Hilary Mantel. Before that, Endangered Species by Nevada Barr, Pillars of the Earth by Ken Follett, Her Fearful Symmetry by Audrey Niffenegger, The Help by Kathryn Stockett, Roadside Crosses by Jeffery Deaver, Still Life by Louise Penny, not necessarily in that order. I'm currently reading New York by Edward Rutherfurd. I've got Push by Sapphire and An Illustrated Atlas of the Civil War waiting on the shelf when I'm done. And I bought Scarecrow a copy of Unseen Academicals by Terry Pratchett for solstice. When he's done with it, I'll drop everything else and read that next. I'm seriously due for a Terry Pratchett fix.

I'm still new enough to retirement that I feel vaguely guilty about spending all this time reading for fun; isn't there something else I should be doing? For the first time in my life, the answer is No.

In some respects, acknowledging that I have nothing better to do is painful. In other ways, it's something I might be able to get used to.

His own heart laughed

"His own heart laughed;
and that was quite enough
for him."
     --Charles Dickens
     --A Christmas Carol

Instant Gratification

I have always imagined that Paradise will be a kind of library.

-Jorge Luis Borges

I love libraries. I remember going to the old Santa Monica Public Library when I was a kid. The childrens books were downstairs, around the corner from the main entrance. We could only go to the library when my mom was in town running errands. Most of the time it was the bookmobile, at the end of our street on Saturday afternoons.

There was the chemistry library and the biomed library at UCLA.

There were afternoons sitting on the floor of the kids' section of the Lansing Public Library, browsing through books to take home to read to Tuffy.

For a while, I even had a job where I spent much of my time digging up information in the Library of Michigan and the Michigan State University Library. How cool is that? (Unfortunately, not cool enough to put up with a sociopathic boss. But it was a pretty cool job.)

In Seattle, of course, librarians are revered -- one even has her own action figure. Living out in the 'burbs, our local libraries are part of the King County Library System (KCLS). When we moved to town, we got library cards before we unpacked our stuff. Browsing for books is one of the best possible ways one can spend an afternoon.

Book browsing is, however, a hands-on activity. It's just not as much fun when you have to ask somebody to take the book off the shelf, open it for you, and turn the pages so you can read bits and decide if you want to check it out. Scarecrow is willing to help me, but I don't do much in-library browsing anymore.

For me, the coolest thing about the library these days is online access to e-books. I can check books out, download them, and read them on my laptop -- no hands! It's all about instant gratification. On Thanksgiving day I ran across a reference to a book that sounded interesting. The library was closed, but the web site was open. They had the hardcover, the audio book, and a digital version. Five minutes later I was reading it.

Reading a book on my laptop is not as satisfying an experience as holding a physical book in my hands, I admit. But it's a lot better than whining about how I have nothing to read!

Downloading audio books has the same instant gratification factor and no-hands accessibility, and depending on who reads them, they can be pretty good (or really terrible). The thing is, if you fall asleep when you're reading a physical book or an e-book, it stops turning pages so you can pick up where you left off. An audio book just keeps on reading.

KCLS even participates in an adaptive technology loan program. I got to borrow a trackball, to see if it would work for me, before I went out and bought one. How cool is that?

I love libraries.

Our whole American way of life is a great war of ideas, and librarians are the arms dealers selling weapons to both sides.
-James Quinn

In the nonstop tsunami of global information, librarians provide us with floaties and teach us how to swim.
-Linton Weeks

MS Story -- Years 17 - whenever

Picking up where I left off:

In spring 2004 my hands were numb, but even two years after the exacerbation that took them out they still seemed to be improving at a rate so gradual I wondered if it wasn't just wishful thinking. So, maybe still getting better. At least, not getting worse.

As we began to get the occasional "sun break" (a weather phenomenon apparently unique to the Pacific Northwest), a friend from work and I started going for a walk at lunch. One otherwise unremarkable day, we were coming back from an otherwise unremarkable walk when my right knee began hyperextending every time I put weight on it. Made for a very awkward gait. I glumphed back to my office. After sitting for a bit, I was OK again.

That was the top of the ski jump. Walking gradually, steadily got harder and harder. At first the problem only cropped up when I tried to walk a significant distance. I started carrying a very cool hiking stick, one with which I had hiked many pre-impairment miles, in case I had trouble getting back where I started. On one memorably humiliating occasion I was crossing a busy intersection near the office with a couple of coworkers when I lost my balance and fell. It took both of them to get my sorry butt out of the street. Can't like it.

At some point along in here, I started having real problems with fatigue. Any physical activity was just such hard work. The harder I tried, the stiffer I got. Life as isometrics.

I tried Betaseron. After every shot, I felt pretty much like crap up to about four hours before it was time for the next shot. And it wasn't making any difference. The neurologist suggested, in the nicest possible way, that it might have been more effective and had fewer side effects if I had started it earlier. Maybe so. At this point, saying I may have brought this on myself may -- or may not -- be true, but it's not particularly helpful.

I tried Novantrone. The side effects weren't too bad, the bright blue urine was kind of cool, but you've got to wonder about a drug the nurse has to wear a hazmat suit in order to administer. And it wasn't making any difference.

I tried Tysabri. No help there, either.

After a while, even standing up became an adventure. I'd be standing there, minding my own business, not doing anything in particular, and suddenly realize "Oh shit. I'm falling again." Scarecrow and Tuffy learned that a sudden loud crash no longer meant the dogs were doing something inadvisable. Now it was at least equally likely they'd need to haul me up off the floor. And repair whatever I broke on my way down.

I went from hiking stick, to forearm crutches, to a manual wheelchair with a power scooter for longer distances.

That worked as long as I could still move my hands and arms. My hands were numb, but I could still use them. Kind of. I was already so clumsy that I really don't remember when the sensory problem also became a mobility problem. Whenever it started, progression was gradual but steady. Two years ago I finally gave in to the physical therapist, who had been trying for years to get me into a power chair. Which is another whole story in itself -- one for another time.

And that's where I'm at. I can't stand or walk, I have very limited use of my arms, not much use of my hands. Fatigue is a problem. I think my cognitive processes are about the same as they ever were, which may not be saying a great deal.

So, OK. That's my MS story. Can I go back to something fun now?

Although I'm not much of a fan of spectator sports, I like Pac-10 volleyball. We might go to the UW game tonight. They're playing UCLA. It should be a good game. I'm a UCLA alum and Tuffy goes to UW, so I don't really care who wins. Or maybe we'll go tomorrow night, when they play USC. I always like to see somebody beat USC. And I'm looking forward to spending some quality time this weekend with a stack of library books. I'm part way through Narrow Dog to Carcassonne by Terry Darlington. Jim the whippet -- the narrow dog in the title -- is clearly Bareit's alter ego.