His own heart laughed

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

Taking Inventory

They're taking inventory today in the "Bob's Books" department of Bob's Books and Adult Day Care Center. Everybody is busy in the warehouse. They brought in pizza for lunch, and got enough for the "Day Care Center" department too, which is nice because it's just me, and I'm not helping with inventory.

I guess with the end of the year and all it's a good time to take some sort of inventory, a summing-up of the year just past. That's what newspapers (remember them?) and magazines and TV and radio do this time of year; seems like there's no getting away from it. But me, I'd really rather not just now. I had a couple of really dark days right after solstice (yeah I know -- everybody did) and I feel like I'm still climbing back. For people with progressive disease, reflecting over the previous year and anticipating the coming year is something you want to be very careful about. A year ago I could do a lot of things I can no longer do. By the end of next year I'm unlikely to be able to do everything I can do now. I don't think I'm being negative or defeatist or giving up, or failing to be hopeful or positive or tough or determined or inspiring or any of that. It's a progressive disease. That's how it works. I'm just sayin'. At this point, for me, a good day is one that's not a whole lot worse than the day before. A good year would be one that's not a whole lot worse than the last. I'll plan for the future as best I can, but getting through today is about all I can manage. If I can do that, we're good. One day at a time.

So, as days go, yesterday was a pretty good one. And old friend from southern California was in town visiting her sister and brother-in-law, and they all came by for a visit. She brought Lucy the golden retriever, which Ernie and Bareit thought was a very fine thing. Tuffy kindly  baked us a batch of brownies. I think we managed to save her a couple.

Winter!

I love winter!

The solstice is past (yes, we had a lovely holiday, thanks for asking) and each day is a little longer than the day before.


Even though the coldest weather is probably still a month or so off, here in Seattle we'll start seeing the first signs of spring almost before the last of the holiday lights are put away.

I've lived here 15 years, but I still worry that the buds and shoots that start to appear in February and March are way too early.



In Michigan, they'd be goners for sure. Here, most years, their optimism is justified. We'll get some cold, maybe even some snow, but spring will be here before too long.


I'm ready. I love winter, but I'm always ready for spring.

Whatever you celebrate this time of year, I hope it is a time of joy and peace.

Photo credit: Tuffy, last winter, in the appealingly-named Swap Creek Park, across the street from our house.

Home Alone

Scarecrow just left for the grocery store. He won't be gone long. It's only a mile away, and he's only going to pick up a couple of things. So I'm here by myself.

It's scary.

I haven't been a quadriplegic for very long, so I'm still getting used to it. Being entirely by myself, nobody within hollering distance, is probably a bad idea. Since I'm very good at imagining, I can imagine all kinds of things that might happen that would require opening doors, or pulling plugs, or turning knobs, or pushing buttons, or calling 911, or, oh, I don't know, anything. None of which I can do. None of these dire circumstances are very likely, I know, but still.

I don't like this. I always liked being by myself. I got testy and unpleasant if I had to be around other people all the time. I do not like being entirely dependent on another person, to an extent I never could have imagined.

Oh never mind. He's back. I know we need to make provision for times like this, I know I know I know. I know we need to get some respite time for Scarecrow. I know we do. Tomorrow for sure. I'll think about that tomorrow.

A Different Kind of Holiday

There was a time when Christmas at our house was occasion for great bustle and festivity. House decorated inside and out, a tree big enough for the eclectic collection of ornaments we've accumulated over the years, artfully (if I do say so myself) wrapped presents piled underneath, hand-lettered cards, cookies, food, the whole nine yards. I was really big into Christmas.

Then, at some point, I got to wondering why we were making such a big deal out of a Christian holiday when we aren't even nominally Christian. Somehow devoting that much energy to a Winter Festival of Crass Commercialism and Greed was not a particularly appealing alternative. That's not to say I didn't see anything to celebrate this time of year. Living for years in gloomy, dreary Lansing, Michigan, and then in gloomy, dreary Seattle, I would always count the days to the solstice, anxious to see the sun (gloom permitting) for a little longer each day. OK, so why not just call a solstice a solstice, and celebrate that instead? We can still have the house decorated inside and out, a tree big enough for our collection of ornaments, presents, cards, cookies, food, and everything else. Most of the holiday symbols (lights, evergreens, wreaths) aren't inherently Christian anyway, although I'm not entirely sure about red-nosed reindeer. Over the years we've developed our own traditions into a celebration that we find satisfying and meaningful. It's more about what we're celebrating, and less about stuff. Although there's a little bit of stuff, too. I mean, get real.

So we usually do a different kind of holiday anyway, and this year it will be even more different than usual. Because of the Remodeling Project That Wouldn't Die, we have piles of construction stuff in our front room. Since our decorations are all in storage, we won't have the house decorated inside and out, and we don't have anyplace to put a tree. Since the solstice isn't a holiday for anybody else, we may even have a construction crew at work. I suppose we could tell them not to come, but if it gets The Project one day closer to being done, we'll celebrate around them. So we'll be doing something different this year, although I don't yet know what, exactly.

Maybe we'll just celebrate by lighting candles on the longest night of the year. We'll build a fire (Seattle air-quality permitting). We'll be together. We'll be warm, and dry, and fed. That would be enough.

Red Queen Redux

Yesterday I had an appointment with the physical therapist. I've worked with this woman for years, checking in with her every time the Red Queen challenges me to another race. She's not only very good at what she does (the therapist, I mean, not the Red Queen, who is also very good at what she does, which is why I need to see the therapist), she's a great person as well. I like her a lot.

The reason for this visit is that, once again, I'm looking for another way to control my power chair. I was in for the same problem just six months ago, but I've lost so much function in my arms and hands since then that the solution we cobbled together is already not working for me anymore. We talked about solutions that I could probably afford, which might work for a little while. And we talked about options that might provide a longer-term fix, but would probably exceed the maximum my insurance will pay for durable medical equipment. All of which assumes I can get my COBRA continuation coverage set up, which is a whole 'nother rather tiresome story. The upshot of all this is that we will talk to a DME provider, find out how this might work, and what it might cost. And I'll talk to the COBRA administrator to get the insurance thing straightened out. You know, dealing with a disability is bad enough, but doing what you have to do to be able to deal with the disability is a real pain in the butt!

I Have Been So Looking Forward to This

Today is Tuffy's last day as a teenager. Tomorrow she turns 20.

As teen years go, I have to say I think we got off pretty easy. I have no teen-zilla horror stories to relate. Aside from the occasional Sunday night emotional core meltdown, she has always been even-tempered (for a teenage girl-type person) and kinda nerdy, taking nerdy classes, playing a nerdy instrument (viola), and participating in a nerdy sport (wrestling, two-time All-American, hence the nickname). She has never felt obliged to do what everyone else does, and doesn't care about being cool. Gotta like that, in a kid.

Still, I'm relieved to no longer be the parent of a teenager. I don't understand her preference for English and philosophy and drama classes instead of chemistry and zoology, but I don't have to -- she's 20 years old. I don't understand going to the gym six days a week, doing mixed martial arts, but I don't have to -- she's 20 years old. She's learning to go her own way, and I'm learning to let her do it. It will be an adventure for both of us.

The Runaway Blog

I have a rather embarrassing question to put to you long-time bloggers: Does your blog ever run away with you?

Is it just me? Sometimes I start a blog post with a particular, if vague, topic in mind, and without realizing it wind up running off at the pencil about something entirely else; or wind up making an entirely different point than the one I set out to make. That supposes, of course, that I set out to make a point, which I frequently do not. Sometimes I get to the end of the post before I realize I did, in fact, have a point to make. Of course, there are times I intend to make a point but don't quite manage it. That happens a lot, but that's something else. This is like a horse that gets the bit in his teeth. You're going to go where he takes you, and there's not a darn thing you can do about it.

There are times when I'm partway through a blog post and realize I've changed my mind, or I've talked myself out of what I thought I was going to say. Or I suddenly figure out something I didn't understand, when I may not even have realized I didn't understand it. I admit it's not usually an insight into the inner workings of the universe -- more like what I'd have to call a Blinding Flash of the Obvious -- but an "aha" moment, however minor.

I'm new to this blogging stuff. I spent most of my working life earning a living by writing, but sitting down to write about whatever I want is a totally new adventure for me. It takes me unexpected places. I tell people I don't know things about myself I didn't even know I knew. It's kind of scary.

Is that why so many people do this?

Pinching Pennies

Today I finally get to cancel our family cell phone service. I've really been looking forward to this. (Sounds kind of pathetic, I guess, but hey, you've got to get excited about the little things.) We had a pretty cheap plan for three phones, but since I can't use a regular phone anymore I thought I'd see if we couldn't do better with a plan for just two phones. Looking back over the last couple of statements to see how much we used the darn things, I found we were averaging, maybe, 10 minutes a month for the three of us. We don't talk on the phone much. So, yeah. We switched two of the phones to pay-as-you-go, and today I get to cancel the service.

While our house has been torn apart, we've had a bunch of stuff stashed in a self-storage place. I thought it would only be for a month or two, but it's been a year. In the next week or two, our remodel should be close enough to being done that we can get that stuff out of there. I'm really looking forward to that, too.

As an aside, if you can get along without something for a year, you've got to wonder how bad you really need it. There've been surprisingly few things we wished, at some point, we had handy, and only one or two items we needed badly enough to go down and retrieve. I think there's a lesson lurking in this somewhere...

While it seems kind of Scrooge-ish to be looking for ways to pinch pennies this time of year, the transition from gainful employment to retirement benefits made some significant changes in our budget. We've had to distinguish between what we need, what we want, and what we really can do without. I'm not sure that's bad. We can do without cell phone service we don't use. We don't need to rent a storage shed for stuff we don't need. With my birthday, my dad's birthday, Tuffy's birthday, solstice, and my brother's birthday coming one after the other, it's easy to get crazy. Tuffy's tuition is due in January. Let's keep our priorities straight. We'll still buy presents. We just won't be spending money for the sake of spending money. We'll try to focus on what we're celebrating, and why.

Now, if you'll excuse me, I have to cancel my cell phone service...

Virtual Friday

It's funny that I still think of weekends as weekends. Even though I go in to work every day with Scarecrow, it's not like I do any. Still, Scarecrow doesn't have to work tomorrow, so today's a virtual Friday. I still like them.

The chore for today was signing up to continue health insurance coverage for Rowan and me under COBRA. With the 60% American Recovery and Reinvestment Act subsidy it's still going to cost more than I paid as an employee, but not nearly as much as I had feared. Of course, the subsidy only lasts nine months, but you can just call me Scarlett -- I'll think about that tomorrow.

The chore for tomorrow is to renew my Disabled Parking permit. The task itself is no big deal; Scarecrow will just stop in at the doctor's office for a signature. It's just odd to think that it's been five years since I got the darn thing. When I got it I could still walk, a little, using Scarecrow's arm for support. I could still drive, getting my manual wheelchair in and out of the car myself. I still had a day job, and went in to work every day. I brought home a paycheck that I'd earned with my own little hands. I could still play music. Recreationally. At least, it was recreation for me. My family would probably have called annoying noise -- it was a banjo, after all -- but they were kind enough to put up with it. (I might also mention that I have accumulated a serious pile of annoyance credits. Scarecrow plays accordion.)

It's realizations like this that sneak up and smack you upside the head, sometimes. You're going along, doing an everyday chore, minding your own business, and whap.

I need to stop and think about that for awhile.

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