A mostly true account of life with a guy, a recently-ex-teenager currently living and working in Korea, a couple of narrow dogs, retirement from a job as a tech writer, a recently-acquired obsession with stalking dead people, and MS.
One evening the king will say, 'Oh, Liza, old thing —
I want all of England your praises to sing.
Next week, on the twentieth of May,
I proclaim Liza Doolittle day!
Audrey Hepburn was beautiful, but Julie Andrews will always be Liza Doolittle. Just so you know.
OK, I admit it, dark shameful secret: I love musical theater. That's even more humiliating than admitting I like old-timey music, but there it is. Now you know.
It never bothered me that characters burst into song for no apparent reason. The production number with only a tenuous tie to the plot line? Whyever not? Camelot! My Fair Lady! Oklahoma! The Unsinkable Molly Brown! I could rarely afford to see a live performance, but when I did it was a big production, so to speak. A Chorus Line. Irma La Douce. Richard Kiley in Man of La Mancha. Debbie Reynolds and Harve Presnell in Annie Get Your Gun. The Robber Bridegroom (Scarecrow was one half of the two-man on-stage orchestra for the Boarshead Theater production in Lansing Michigan in 1989. I think I saw it four times.)
Ernie was not a particularly standoffish greyhound; he just preferred to have a bed to himself. All of our other greyhounds, of either gender, always felt the same way. One dog, one bed. In training and on the track, greyhounds are accustomed to having their own kennel space. When they first come off the track, some retired racers can be pretty testy about being approached where they sleep. Although Ernie was never crabby when Bareit invaded his personal space, he always resignedly got up and went off to sleep someplace else.
It was a thing Bareit could never understand. It's just not part of the whippet mindset. The boys got along fine in every other respect, but their preferences in this regard were irreconcilable.
With two whippets, it's different.
Giada (her registered name is Apex Everyday Italian -- her breeder is a Food Network fan) is now Jasmine, or Jaz. She seems to be settling in fine, thanks for asking. Like Bareit, she's a washout from the show ring. Bareit didn't have the temperament to be a show dog; Jaz didn't have the body. When they're playing in the yard, she doesn't understand why Bareit's always chasing her. Bareit doesn't understand why she's always running away. They'll figure it out. The two of them are well on their way to becoming a dog unit. Jaz is very fond of Tuffy, who is flattered by her attention. Although she's still on her best behavior, she has the potential to be a world-class counter surfer and Bareit's capable partner in creative mischief.
From years of habit we still set out one bed for each dog, but I'm thinking we can reclaim some of our floor space. One greyhound-sized dog bed can probably accommodate 6-8 whippets. Maybe more.
One full-size human bed can accommodate two adult humans and two whippets, although the sharing of covers is a matter of perpetual negotiation. And whippets never have enough pillows.
"Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else - if you run very fast for a long time, as we've been doing."
"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place."
Lewis Carroll
Through the Looking-Glass
Last week we finally got to meet with the wheelchair guy. He says a joystick control is really the best way to control a power chair and he's probably right about that, but having tried a variety of shapes, sizes, and locations for the joystick on my chair, we had to conclude that I just can't do it that way any more. When a 350-pound chair goes unpredictable places at unpredictable speeds, bad things happen. The plan was to install a head control, to see if it might enhance the safety of persons and property and inattentive whippets in my immediate vicinity. If it works, we can start worrying about what it will cost, and how to pay for it. No point going through the agony and expense involved in procuring durable medical equipment, only to find that the Red Queen is still winning the race.
So the wheelchair guy (I'll call him Mike. Because that's his name.) shows up with an extremely large, user-hostile-looking contraption, which he proposes to install on my chair and position around my head.
After about an hour of plugging and unplugging and twiddling and muttering, he gave up. The control unit, switches, head array, and chair, all made by different manufacturers, are apparently not plug-and-play. At least, they are not plug-and-play-nice. Just as well. The hardware cobbled together for the trial, which Mike assured me was a lot scarier looking than the equipment I would finally wind up with, was plenty scary looking. I already feel like a robo-monster in this chair. I would rather not make it even worse. I would do it, if that's what I have to do to be able to drive this thing. But I would really rather not.
Mike's fallback plan is to get the chair manufacturer to provide a loaner with head controls that I can try for a couple of days. He'll call us when he's got something set up. So once again, we're waiting to hear from the wheelchair guy.
Although Bareit was doing surprisingly well as an only dog, we really wanted him to have some company during the day. Greyhound Pets recently brought in 22 dogs from Oklahoma. They'll be available for adoption in a couple of weeks, after they've been vetted, neutered, etc. We expected that one of them would become Bareit's new buddy. Really, what's the chance that we'd come across a whippet looking for new digs sooner than that?
Like Bareit, Giada is a refugee from the show ring. She's a sweet little thing, petite and fine-boned. Next to her, Bareit looks like a tank and sounds like he's stomping his feet when he trots down the hall. They got along fine.
What are the chances?
Scarecrow now has two little red and white shadows.
I might have called this "Confessions of an Ex-Morris Dancer." Although it's been many years since I danced at dawn on May Day, and the Greenwood Morris side no longer exists, I have fond memories of gathering at 5:30am in the Beal Botanical Garden on the MSU campus to dance the sun up. Well, reasonably fond memories. Dawn on May Day in Michigan can still be pretty darned cold. Wet, even, sometimes. Hey, it's a tough job, but somebody's got to do it.
I've still got my Greenwood Morris kit: the green vest with the embroidered badge, the arm bands, the hat with flowers and ribbons and pins, a big stack of white hankies, and of course the bells. When we were clearing out all of our surplus stuff I just couldn't bring myself to let it go. Really, how much space does it take? Besides, you never know. I might need it again someday.
So, I wasn't dancing at dawn on May Day this year, but lucky for you the Lassington Oak, Forest of Dean and Wild Oats Morris dancers were at the summit of May Hill, Gloucestershire to get the job done.
Over the last couple of days, Ernie's meds have been less and less effective at controlling his pain. This morning we decided he'd had enough, and took him to the vet for the last time. We are hurting now, but he's not.
A couple of mice, actually. Tuffy found one the other day that had fallen into the kitchen trash can and couldn't get out. (It wasn't this particular mouse. She took a picture, but I can't find it at the moment. It looked very much like this one.) She took it across the street to the park and let it go. A benevolent death sentence, most likely, since all kinds of bad things can happen to a mouse released in an unfamiliar place, but somehow it doesn't seem as heartless as dispatching it on the spot, even if a quick, painless demise would probably be more merciful in the long run. Anyway, the same thing happened a couple of days later. Different mouse, presumably. Our empty kitchen trash can is apparently a pretty good mousetrap. Or maybe we have a population of particularly clumsy mice.
I don't mind mice. In fact, I'm rather fond of them. I trapped and released a lot of them, back in my days as a zoologist. Not house mice so much as deer mice, harvest mice, pocket mice, meadow mice, that kind of thing, but the same general idea. Still, they're not very tidy, so I'd rather not have them in the house.
In Michigan we had mice invade the house every year when the weather turned cold. It was just an annual thing. You could hardly blame them, Michigan winters being what they are. One year, when Tuffy was about three, this happened to coincide with the state of Michigan filming some of the kids at her day care center for a series of public service announcements about normal child development. Since they wanted an example of a child of about three putting words into short sentences, the film crew needed a child who would talk. The daycare staff pointed them towards our relentlessly verbal daughter. The resulting PSA included a clip of Tuffy exclaiming, "In our house!"
We later got a videotape of the whole session, including the conversation from which this clip was extracted. Tuffy was explaining, at great length, about how we had mice "in our house! In my room!" She even recounted how one of the dogs caught a mouse. And ate it.
I'm glad they didn't turn us over to protective services.
Eventually, snap traps and peanut butter got the mice out of our house in Lansing. I guess we should do the same thing here.
As a young and impressionable child I remember reading a story in which the main character (Pollyanna?) visited a neighbor with a gift of calf's foot jelly. I remember not knowing what calf's foot jelly might be, but thinking it sounded disgusting. It never occurred to me that I might one day be in a position to be the recipient of such a gift.
Last weekend an old friend and her daughter came by the house for a visit. I think I first met this woman when we were in kindergarten, long ago and far away. We sat next to each other in Mr. Vincent's class in sixth grade. We reconnected last year because of a high school reunion neither of us attended, when we discovered we have lived about 10 miles apart for the past 13 years or so. I've really enjoyed getting reacquainted. Her life and experience has been very different from mine, but we're still interested in a lot of the same things. She's exactly the person I would've expected the girl I once knew to grow up to be. I would've liked her even if we weren't already friends. Her daughter is a kick. We had a beautiful sunny afternoon to sit out on the back deck and catch up.
Which left me thinking about calf's foot jelly. After they left, I finally looked it up. According to Gourmet Britain ("your guide to the best of British gourmet food"), Calf's / Calves Foot Jelly is "a jelly made by making a stock that includes a calf's foot. This naturally sets when cold, and from Norman to Victorian times used to be popular as nourishment for invalids. The Normans considered it as a treat in normal life, flavouring it with pepper and saffron, or perhaps red wine, then decorating it with laurel leaves - then serving it at banquets." They add that "The calf's feet will probably have to be ordered."
I don't feel like an invalid. I'm hardly ever sick (if I could apply my knuckles to my wooden skull, I would be doing it now). Still, it seems like a visit with me must be like making a charitable visit to a sick neighbor, or a frail, elderly relative. Our visitors come in, we sit down, and we talk. If Scarecrow's not busy painting the new siding on the house we might remember to offer something to drink, or brownies if I managed to wheedle Tuffy into making some. That's pretty much it. We don't go any place or do anything. We just talk. I'm sure I find this way more entertaining than somebody who actually has life.
Still, if someone is willing to do this for me, I'm grateful. I try not to pounce on them and talk them to death, although I admit I'm still working on that. it's wonderful to talk to a real live person.
As long as they don't bring calf's foot jelly. I still think it sounds disgusting.
Seems everybody has been going through old pictures lately.
I found this old picture of The Better Than Nothing String Band, taken at a Greyhound Pets, Inc. fundraiser, I think in 2004.
The guy on the right is Brian, a GPI volunteer from BC who was fascinated by Scarecrow's octave mandolin. After checking it out, he picked up Scarecrow's guitar and sat in with us for a while. I wish I could remember his last name.
Lots of strings: fiddle, banjo, guitar, octave mandolin, mandola, mandolin, mountain dulcimer... I think that's about it. And Scarecrow's big shiny red mother-of-toilet-seat triple-row button accordion.
No audio. Probably just as well. We probably didn't sound as good as I remember, and as I remember, we didn't sound all that good. But it was fun. And we were Better Than Nothing.
Being quadriplegic creates some unexpectedly perplexing questions of etiquette. I never anticipated being quadriplegic, of course, but even if I had, I could never have anticipated how awkward it would make the most basic social interactions.
Like shaking hands.
I'm always momentarily horrified when I see someone approaching me with their hand outstretched. I don't want to be unfriendly or rude, but no way can I extend my arm and manage a normal handshake. Even a fist bump is beyond me. My usual response is an awkward smile and a shrug, as I mumble something about how "I can't... ", leaving the other person standing there with their hand stuck out, looking awkward.
I visited the Rehab Medicine Dr. the other day. You've got to figure he sees more than his share of quadriplegics, so he must know what to do in this situation, right? His solution was to walk up, reach into my lap, and shake my fist. It felt kind of... weird... but that's one approach, I guess. I can't really see sticking out my fist as best I can and expecting anyone else to know what to do with it. I wouldn't, if it was me.
That was probably the most interesting thing about the visit with the Rehab Medicine guy. I didn't really expect him to have much to offer, but I guess it's worth checking in from time to time. He's a really nice guy, and he is good about working through my laundry list of symptoms and making suggestions. Mostly he told me to do what I already know I need to do: arrange for backup/respite care, get a lift, make sure I periodically shift my weight off of proto-pressure sores, change the control on my wheelchair so I can get out of the house. Somehow, hearing someone else say it does not make it seem less overwhelming. I always hope that one of these appointments will just fix everything, and even though I know this is an unreasonable expectation, I'm always mildly disappointed when it doesn't.
Still, the Rehab Medicine guy spent an hour with us ("us" being me and Scarecrow, not the Royal "us") and gave it his best shot. On the way out, he reached in my lap and shook my fist again. It still felt... weird.
Some people, when they realize I'm not going to be able to do anything with their outstretched hand, manage to gracefully resolve the situation by patting me on the shoulder. That's OK. It's actually nice.
I try not to be a word Nazi. I realize language evolves; usage of existing words changes, new words come into common use, others fall out of favor. I know that happens. Most of the time, I think it's interesting. It's just, occasionally, I run across something that sends me over the top.
I can't seem to help it. I scratched out a living as a writer for 20-some years. Admittedly, it wasn't art. I have no literary pretensions. Most of the time I was writing software documentation; user manuals and online help. In the unlikely event that anybody ever reads a System Administrator Guide, they aren't left thinking, "Wow, that's really a good manual." That's not the point. Tech writing may not require an extensive vocabulary, but the words you do use matter.
Like every other writer I know, I have my own personal list of word or grammar things that set my teeth on edge. "Access", for example, is not a verb. Neither is "Author." I know both have become common usage. They still offend me. "Data" is plural. "Utilize" is not the same as "use." Jargon makes me itch.
Every place I ever worked, the marketing department eventually stopped sending me copy to review. I guess they got tired of having me ask why you'd want to say software is "seamless" when software never has seams, or pointing out that "mission-critical", in the military sense, means if this doesn't work somebody dies. Don't you think it's a tad overblown when you're talking about software? Or editing a product overview because the super-condensed summary of what the product does is not exactly true. Marketing jargon makes me crazy.
The other day I started thinking about a word I've seen a lot lately:
Monetizable
Seems like it's everywhere, usually in the context of making money from a web page. It has such a marketing-y, jargon-y sound that I figured some marketing writer must've invented it because they thought it sounded cool even though you could use regular words to say the same thing. As I was working myself up to a truly tumultuous (if totally pointless) uproar, I tried to confirm that reputable dictionaries contained no such word. Imagine my surprise and annoyance when I found the following:
n Entry: mon·e·tize
Pronunciation: \ˈmä-nə-ˌtīz also ˈmə-\
Function: transitive verb
Inflected Form(s): mon·e·tized; mon·e·tiz·ing
Etymology: Latin moneta
Date: circa 1879
1 : to coin into money; also : to establish as legal tender
2 : to purchase (public or private debt) and thereby free for other uses moneys that would have been devoted to debt service
3 : to utilize (something of value) as a source of profit
— mon·e·tiz·able\-ˌtī-zə-bəl\ adjective
— mon·e·ti·za·tion \ˌmä-nə-tə-ˈzā-shən also ˌmə-\ noun
Merriam-Webster seems to think it's a real word. False alarm, I guess.
Don't misunderstand me. I'm totally behind the concept of listener-supported radio. I've pledged to KUOW every year since we moved to Seattle, and belonged to WKAR in Lansing before that. I wake up to it. I listen to Morning Edition in the car on the way to work, and All Things Considered on the way home. I look forward to The Swing Years and Beyond on Saturday nights. We've got KUOW coffee mugs, and Scarecrow uses KUOW bags at the grocery store. We've got the T-shirts. I even listen during the pledge drives. The interminable pledge drives.
I used to read the newspaper. All of it. Every day. The LA Times. The Oregonian. The Lansing State Journal. The Seattle Post-Intelligencer, until its recent unfortunate demise. I love newspapers. I would probably read one still if turning pages hadn't become such an exhausting wrestling match and if the Seattle Times hadn't pissed me off by endorsing Dubya for president. I no longer get the news from a newspaper.
I don't get the news from TV. I don't have a TV. I haven't lived in a house with a TV since I moved out of my parents' house when I was 19, back in 1536. I even raised a TV-free child.
There's the Internet, but like most people I only read websites that agree with me. Left to my own devices, I would get a very biased picture of what's going on in the world. I need a source of news that will inflict information on me that I wouldn't seek out on my own, stuff I may not like but I ought to know.
That leaves radio.
So I listen to NPR even during the pledge drives. The interminable pledge drives.
Sometimes I think perversity has been the dominant force in my life.
As a kid in 4-H, I raised beef cattle because my mom said they were too big, and I wouldn't be able to handle them. I majored in zoology in college, because a biology teacher in high school said my test scores "weren't bad... for a girl." I went into genetics because everybody said the class would kill me, and I specialized in population genetics because of its emphasis on quantitative analysis, when math has never been my long suit. I got started in tech writing when I applied for a job for which I was totally unqualified, and I got it.
Tell me I can't do something, and I'm all over it. Conversely, tell me I should do something, and it ain't gonna happen. Uphill and into the wind all the way, that's me. Stupid, I know, but there it is.
So this morning, when I started thinking I should come up with a blog post because I hadn't written anything for a couple of days, I thought... should? Should? Nah. I don't think so.
Occasionally I find myself starting a blog post just to see what's on my mind. The obvious risk in doing this is that I will find that there is, in fact, absolutely nothing on my mind. I might revisit the events of the last couple of days. Nothin' there. I review what might be coming up in the next couple of days. Nope, nothing there, either. Books read? Movies watched? News? Weather? No help. It is possible, although unlikely, that I won't even have anything to whine about. There may not be anything on my mind at all. It may be totally empty. It could happen.
More likely I'm so preoccupied with the trivialities of my insignificant day-to-day existence that the problem is not that there's nothing on my mind, but that there is a lot of stuff on my mind, none of which is very interesting. Scarecrow needs to ship the camera I sold on eBay. We need to stop by the vet's to pick up a refill for Ernie's meds. I need to encourage (read: nag) Tuffy to follow up on her efforts to secure gainful employment for the summer. I still need to implement a plan for emergency/respite care. Wonder if there are any good sales on Easter candy? Sometimes I bore even myself.
I wonder if we really finished all those jellybeans?
If you want to use voice recognition software, you need a microphone. Counting the one that arrived two days ago, I'm on my fifth.
The problem has never been the accuracy of voice recognition, although that is better with a better microphone. It's more a matter of comfort and convenience, which can be a big deal if you use it all day every day.
My first microphone was the one that came with the Dragon NaturallySpeaking software. I pretty much immediately replaced it with a similar, but higher-quality, wired headset. It worked fine and was comfortable enough, I had to take it off every time I wanted to leave my computer. More accurately, I had to have someone else take it off for me. And every time I put it back on, I had to adjust the position of the microphone. More accurately, I had to have someone adjust the position of the microphone for me. If that's the only choice, that's what you do, but it's kind of a pain in the butt.
Imagine my excitement when I found a wireless microphone that was accurate enough to use for voice recognition. I could leave my computer without having to be untangled from my headset. The Bluetooth connection was not as reliable as one might wish, but I was willing to deal. And there was still the issue of microphone position, but since I wasn't putting it on and taking it off as often, it wasn't as much of an annoyance.
The latest version of Dragon NaturallySpeaking came with a special offer on a different style of Bluetooth headset. The price was right, so I gave it a try. Accuracy was fine and the Bluetooth connection was much more reliable, although this was probably due more to an updated driver for the Bluetooth adapter than to the new headset. The problem this time was the earpiece. If it was in exactly the right spot, it was comfortable, stable, and kept the microphone in the right place. Getting the earpiece in the right spot, however, required that the ambient temperature, relative humidity, phase of the moon, and traffic on I-5 all be exactly right. And you had to recite a special incantation. And I had to be careful not to move my head too much. Most of the time it would start to sag after a while, recognition would get less and less accurate, and eventually it would fall off entirely, wind up on the floor, where it was in danger of being flattened by my power chair. This wouldn't have been a problem if I could reach up and adjust it when it got loose, but I can't. I started looking around for something else.
My latest attempt to attain microphone nirvana isn't a headset at all. It's a microphone on a cable that plugs in to the USB port of my laptop. No Bluetooth, so there's one less layer of technology, which is always good. It doesn't seem like the cable would be able to keep the microphone where you put it, but so far so good. Accuracy seems to be at least as good as any of the headsets, even though the microphone is not always in exactly the same position relative to my mouth. I can move my head without being afraid I'm going to dislodge the darned headset, which, by the end of the day, is a lot easier on my neck. I can move away from my computer without having to be untangled first.
I think it'll do until the next new toy comes along.
I spent some time over the last couple of days trying to figure out what we should do about emergency or respite care. Right now, Scarecrow does it all, everything, all the time, 24/7. We have no backup. And he has a full-time job. T'ain't right.
We should have done it long ago, I know. Although I admit I can be stubborn and selfish, I'm not the one dragging my feet on this. It's not me insisting that I don't want help from anyone else. If anything, Scarecrow has been more reluctant than I am to hire outside help. Still, we've got to do it. If something happens to him, I'm screwed.
OK, so I'm looking up some resources suggested by the MS Society. There are all kinds of places called Helping Hands Somethingorother, so as usual I get distracted by the bizarre things a web search turns up, not least of which is a place where the helping hands belong to capuchin monkeys.
Really? Monkeys as service animals?
Granted, they're small, they live a long time, they're intelligent (whatever that means), they have more-or-less opposable thumbs. Their dexterity means they can perform tasks that the most willing dog simply can't manage. They're cuddly and cute. When they're young.
But no, not for me, no thanks. Even tame monkeys are still wild animals. As adults, they're temperamental and unpredictable. They bite. (Monkeys trained as service animals frequently have some or all of their teeth removed, for safety and liability reasons.) They're messy. Unlike a dog or cat, which is predisposed to keep its nest clean and hence is easily housetrained, a monkey will defecate wherever it happens to be, particularly if it's upset. Some combination of potty training and diapers may be at least a partial solution for a juvenile, but will likely be less successful as the animal reaches maturity. Seems a lot to put up with to have discs loaded in your DVD player or your microwave turned on.
Now, before you light up your flamethrowers, I will admit I've never actually lived with a monkey. My personal experience with monkeys is limited to the six months I spent working at the Oregon Regional Primate Research Center many years ago. I learned that monkeys bite, and they smell bad. My personal experience living with a wild animal is limited to the pet raccoon we had when I was a kid. Imagine a whippet, with fingers.
If I were looking for helping hands, I don't think I'd want them to belong to a monkey. But that's just me.
After a remodel that took 15 months and cost way more than we could afford, our house is now pretty much accessible. We've got the ramp, a front door that is much easier to negotiate, the wide pocket doors, the accessible bathroom and all. We also have a new latch on the kitchen door.
This was not in the scope of the original project. The thumb-latch type handle on the door between the kitchen and the deck broke shortly after we started, and we've been limping along using the keyed deadbolt, with a rag stuffed in the hole where the latch used to be. Finally, last week, Scarecrow installed a lock with the strap-style latch recommended for accessibility.
It's accessible, all right. It took Bareit the ever-vigilant whippet about 15 minutes to learn to open the door by jumping up and hitting the latch with his paw. Now the thunder of whippet feet pounding across the yard is punctuated by the slam of the latch into the wall of the kitchen as he bursts through the door, races on muddy feet through the living room, down the hall, and launches himself in a soaring, aerobatic leap onto the bed.
So we're back to using the keyed deadbolt, to keep the whippet in. Or out. But at least it's accessible.
If they put s#!t in a can, I swear, my mom would buy it. Every time I venture onto eBay, I realize she's not the only one.
In our ongoing effort to bring the volume of our belongings into closer correspondence with the available space in our house, I came across a couple of things I will never again use in a million years but which seemed too valuable to throw away. I decided to put them on eBay. Who knows? There are people like my mom out there.
I've been giving desk-drawer space to a K&E Leroy lettering set ever since my brief and unremarkable career as a zoologist, many many many years ago. It was quite the indispensable tool in its day, for preparing technical charts and graphs. It's now totally obsolete, archaic, even, superseded by garden-variety software installed on pretty much any computer. And it wasn't really something you'd want to keep around to do for fun. Really. Trust me on this. So I put it on eBay. Not only was it not the only item of its kind offered for sale, far from it, but somebody actually bought it. Go figure.
Encouraged by my success, I put up my Olympus OM1 SLR 35mm film camera (remember film?) with f1.8 50mm and f5 85-250 zoom lenses, and a bunch of accessories. It was a fun camera in its day, but I can't remember when I last took it out of the case. And really, film? I invested a fair bit of time in creating a listing that would stand out from the surprising (to me) amount of other old Olympus OM Series hardware. With so many people selling this stuff, I can only assume that there are people buying it. Who knew?
There really are people like my mom out there.
In other developments, Ernie's pain meds seem to be helping, thanks for asking. He is moving a little easier and seems to be resting better.
The ARNP in my family practitioner's office filled out the latest Attending Physician Statement for the long-term disability insurance company, declaring that as much as I wish it were otherwise I am, in fact, still disabled. Since we will apparently need to do this every 6 to 9 months for the next 10 years, she cleverly saved a copy so it will be a quick and dirty process next time.
The wheelchair guy says a joystick of some sort is really the best option for controlling my power chair. I'm sure he knows what he's talking about, but I'm also sure any joystick-type solution is only going to buy us another couple of months before the Red Queen catches up to us again. And since another joystick modification is not that much less expensive than going with a head control, how about if we just cut to the chase? So, he's going to put together a head control for me to try. We'll see how that goes.
So. It's Friday. And it's a beautiful day. (Guess who was re-watching Fargo the other night.) They say the sun may make a few brief appearances this weekend. For March, in Seattle, that will be a beautiful weekend.
I try not to wallow in self-pity, but I admit that yesterday afternoon I put my feet in and swished them around a little. I usually don't post to my blog when I'm feeling picked on because, frankly, I usually don't much want to. I didn't really much want to write anything yesterday, either, so I don't know why I did.
It wasn't even self-pity, really; I just felt sad. I knew we wouldn't have Ernie around for much longer, but I felt sad to have it confirmed. I don't have much mobility left in my hands and arms, but I felt sad to acknowledge that I'm losing what little I have. I had been looking forward to seeing some of our greyhound friends last Sunday, and felt sad that I wasn't able to do that.
I've never been a particularly social person. I worked from home for years without ever really missing the interaction with coworkers in the office. Scarecrow has always been the party animal in our family, not me. Even so, I'm feeling a little desperate to get out of the house. As much as I love Scarecrow and Tuffy, when I see anyone else I pounce on them and desperately try to talk them to death. I almost feel like I've forgotten how to have a normal conversation with normal people. I realize this is largely my own darn fault. The prospect of dealing with durable medical equipment providers is offputting, so I kept putting it off. But it's time. I've got a call into the wheelchair guy, and we'll see what he comes up with.
In other news, my Long Term Disability insurance provider needs another statement from my doctor confirming that I'm still disabled. They say the most recent appointment they have information about was last August. I've explained that I last saw the doctor in August, I have no appointments scheduled, and no particular reason to go. My condition hasn't changed (other than to continue to progress). They say my failure to return an Attending Physician Statement by March 30 will "result in closure of this claim." I'm just guessing, here, but if I called today to get a non-emergency appointment with my neurologist, I could probably see her sometime in July. If I was lucky.
We went through this whole thing in October. Are we going to do it every couple of months for the next 10 years?
It never fails. Nothing snaps me out of a blue funk like getting really pissed off!
I just saw a bald eagle fly past my window. Geez, they're big birds!
Thirty greyhounds, with their people and assorted hangers-on, welcomed spring with a walk around Green Lake in Seattle yesterday afternoon. Ernie would've loved it, but he was too sore and wobbly to go.
His visit to the vet this morning turned up about what we had expected. The new lumps on his leg are malignant (duh). There's no easy way to remove them, even if we were inclined to put him through that, which we're not. His joints are sore. His legs are weak. He screamed pretty much every place the vet poked him, but Ernie is kind of a weenie that way. The vet sent him home with some pain meds. We'll keep him comfortable. He'll let us know when he's had enough.
I'm OK with that. We'll enjoy being with him for as long as we can. When he's ready to go, we'll let him. It hurts that dogs don't live as long as we do, but they don't. Still, when you weigh the pain of losing them against the joy we get from their company, it's always worth it.
I admit I was looking forward to making the walk (roll) around Green Lake myself, even if Ernie couldn't. It wasn't his fault that I didn't go. I've been limping along (figuratively speaking) with bubble gum and bailing wire modifications to the joystick control for my power chair, but I'm afraid the Red Queen has caught up with me again. It's just too hard to make the chair go where I want it to, which, considering the size of this thing, could be really bad. I need a solution that doesn't depend on being able to use my hands. I need to talk to the wheelchair guy again. Maybe he'll have something the Red Queen hasn't heard about yet.
Scarecrow is having hardware issues. His office at Bob's Books is right above the room that houses the Adult Day Care Center, so I can hear the crashing and thumping and muffled, but discouraging, words. It might be a bad time to remind him that he needs to call the vet to make an appointment for Ernie.
There's no mistaking when Scarecrow's mad. He has a crashing, thumping, hollering, foot-stomping temper. It can be quite the spectacle, but it never lasts long and when it's over, it's over.
Me, I'm one for the slow burn. When I'm mad, I'm surly and quiet. I'm slow to forgive, and I never forget. Scarecrow's way is better, really. It's easier on everybody. But everybody in my family was a sulker. I never learned any other way.
Anyway, Ernie has two new lumps on his leg where we recently had the latest one removed. We knew they were likely to regrow, but these came up really fast. His leg didn't seem to hurt before, but now it obviously does. His hind legs are weak. He has slipped and fallen on the hardwood floor a couple of times recently, and has trouble getting up. He has even left a few kibbles in his bowl, which is not at all like our boy. We always said that if Ernie ever turned down food it was time to call the vet because he must have one foot in the grave and the other on a banana peel.
He is 12 years old, and I don't want to keep carving on him, but I don't want him to hurt. So we need to talk to the vet and see what we can do for him.
In the meantime, it's looking like a nice weekend and he still enjoys lying in the sun. As long as the dog bed isn't infested with whippets.
Um. About the bored thing. I've been messing around with my blog template. Let me know if I broke anything, OK? To borrow a phrase from every software developer I've ever known, 'It works on my machine.'
It never fails, seems like. With nothing on my schedule for months in either direction, two things I want to do happen at the same time.
I've been trying to get together with an ex-coworker for a while now, just to catch up, but since she lives way the heck at the opposite end of town, still has a day job, and has to juggle kids and parents and all, it takes some doing. So when we finally figured she could come up on Sunday afternoon, I was really looking forward to seeing her.
Then I remembered that this Sunday afternoon a bunch of the local greyhound folks were planning a walk around Green Lake. I was looking forward to that, too.
Decisions, decisions.
Not a big deal. We'll figure something out. It just seems like the chance of something like this happening ought to be less than 100%, don't you think?
Tuffy is on spring break as of yesterday. I see from her Facebook page that she's planning to spend it trying to find a summer job, applying for a scholarship I've been bugging her about, brushing up on her Chinese, and getting a head start on reading for next term. And I see my cousin reminding her to take some time to goof off and have fun, like she was going to forget. It seems odd to me that I frequently find out what's going on with Tuffy or Scarecrow from their Facebook pages, but there it is. Perhaps it's just my failure to keep pace with technology, but it seems weird to communicate by IM from one end of the house to the other, or even from across the room. We do it all the time, but it still seems weird.
I see from the gingersnap cookie Tuffy left for me in the cupboard that she stopped at Honeybear Bakery yesterday. Nice!
I just got an IM from Scarecrow saying he wants to knock off early and go home. Blue sky, sunshine... I'm out of here!
That's what my 89-year-old dad always says, when he passes a neighbor on his morning walk. Since he does not actually live in paradise, I guess what he means is it's a nice day and he's enjoying life.
It's pretty amazing, really. One morning, about two years ago, my mom found him on the floor. Exploratory surgery turned up three holes in his gut, and a section of necrotic bowel. They did an initial patch up, but nobody expected him to live. When he survived the first surgery they went back in for a more complete fix, and, to general amazement, he lived through that, too. He was on a respirator, on dialysis, in and out of intensive care (mostly in) for about a month. Nobody expected him to live.
Dad had been very clear about his end-of-life wishes. He did not want extraordinary measures taken to keep him alive. He did not want to live hooked up to a bunch of machines. He wouldn't want to live like that.
We had had that conversation, my parents, my brother, and I, sitting around their dining room table. It wasn't awkward or uncomfortable. He had the Advance Directive and all the necessary paperwork. He just laid it out. We all thought we understood exactly what he meant.
Turns out, when the time came, it wasn't that easy. For each treatment option there was a range of possible outcomes, and we had to try to guess which he would find acceptable, if he were able to decide, and which he would not. What if he lives, but he's confined to bed? What if he lives, but is left with a significant cognitive impairment? What if...?
As it happens, we got to have that conversation a second time -- kind of a 'before and after' thing. Dad's happy we made the decisions we did. He doesn't have much memory of the weeks he spent hooked up to machines in the ICU. He says he realizes he could've wound up severely impaired in one way or another, and says he wouldn't have held it against us had the decisions we made resulted in a less favorable outcome. I don't know if that's true, but that's what he says. He says if the situation arises again, which could happen, he's confident that we understand what he would want us to do.
If the situation arises again, I wish I thought it would be easier than it was the first time.
For myself, I don't want to wind up hooked up to a bunch of machines either. Beyond that, I don't know that I'd be able to draw a line in the sand. As a kid I remember reading about a woman who was paralyzed in a skiing accident, and thinking I'd never want to live in a wheelchair. More recently I remember thinking I can deal with not being able to walk, as long as I can use my hands. The point at which I'd say 'I wouldn't want to live like that' has shifted significantly over the past couple of years. What if I couldn't see? What if I couldn't speak? Would I say 'If I ever get to the point where , I wouldn't want to live like that'?
No lines in the sand for me, thanks. This may not be paradise, but it's another day in Seattle. And that's OK.
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.
'Didn't you say you'd left me some steamed cabbage?'
Tuffy gets home late on Wednesday nights, and prowls through the kitchen for leftovers.
'It's in the steamer,' Scarecrow told her.
'There's nothing in the steamer.'
This is not good. Our dogs get veggies from time to time, but a) they're not supposed to steal them off the counter, and b) whippets and cabbage are a lethal combination. You wouldn't think a small(ish) dog can make the air in an enclosed space totally unbreathable, but I tell you, they can. Greyhounds can be bad that way, too, but our creaky old greyhound's counter surfing days are over. It's still too cold to sleep with the bedroom windows open, but we really had no choice.
I really hate it when our house smells bad.
The guy who lived in our house before we bought it was a serious smoker. The carpets reeked. Even the tile in the bathroom smelled like stale smoke. After four years, you'd still occasionally get a whiff of stale cigarette smoke.
And of course, there are the dogs. Gastrointestinal issues aside, greyhounds and whippets are not particularly stinky, but still.
In the course of remodeling our house we ripped out all the carpeting, and threw out the area rugs that were in the living room and dining room. That helped, some. I'm really looking forward to being able to open the windows. What we really need is fresh air.
My mom is a major consumer of air fresheners, and I admit her house always smells nice. It just seems like using one smell to cover up another doesn't really address the problem, and besides, an early traumatic experience with air fresheners left me scarred for life.
Warning: if you're easily grossed out, you might want to skip this next bit.
I was a TA for a Marine Mammalogy class at UCLA back in the early 17th century. We collected specimens of dolphins and pinnipeds for dissection labs, but these were not the tidy specimens of fetal pigs or dogfish sharks that you get from a biological supply house packed in formalin. They were real specimens that died of who knows what, washed up on a beach somewhere, and sat there for who knows how long before winding up in a freezer at the County Museum of Natural History. By the time we got them and thawed them out, they smelled really bad. Really bad. People on the fourth floor of the Life Science building were complaining about the smell. The lab was in the basement. My office was right across the hall from the lab.
We set up a line of room air fresheners in front of fans in each corner of the room, not really because we thought it would help but because we had to do something. It didn't help. The scent of assorted air fresheners on top of decomposing marine mammal pretty much turned me off of them forever.
Maybe we'll just use some Murphy's Oil Soap on the hardwood floor, and wait until it's warm enough to open the windows.
Warning: This post discusses some of the gory details of progressive MS. If you avoid support groups because it's scary to see people in wheelchairs (and I think that's a perfectly reasonable thing to do, myself), you might want to skip it.
You always read about how people who are diagnosed with MS are afraid they'll wind up in a wheelchair. That's the symbol of disability, the point at which you go from being pretty much OK to being disabled. I realize it's a matter of perception, and everybody's different. But I've been unable to use my hands, and unable to use my legs. I've tried it both ways. For my money, not being able to walk is not all that big a deal. Not being able to use my hands is far more disabling.
Not that it's a contest or anything. They both suck. And, unfortunately, they're not mutually exclusive.
Not being able to use my legs means I can't stand or walk, of course. Can't ride a bike (that hurts), can't dance (that really hurts). Hiking and backpacking are out. That's about it. Everything else I wanted or needed to do, I could still do. Pretty much. It might not have been easy, or pretty, but I could do it.
Not being able to use my hands is a whole 'nother thing. Not being able to use my hands not only means I can't do things I used to enjoy, like quilting and calligraphy, or things I did to earn a living, like using a keyboard or a pencil and paper. Not being able to use my hands exposed heretofore unimagined vistas of humiliation; not being able to take a shower or brush my hair or dress or eat or blow my nose or use the toilet without help. If your hands and arms don't work, you're pretty much screwed.
I had trouble getting doctors or therapists to take nonfunctional hands seriously, but show up with a mobility problem and they were all over it. Maybe because the mobility problem was one they could solve.
There are lots of solutions for legs that don't work. There are canes and walkers and crutches and wheelchairs and ramps and curb cuts and elevators and large toilet stalls with grab bars. People can see that you're disabled and, if they're so inclined, make accommodations. If your hands and arms don't work, you just look inept and clumsy.
Having scribbled all this, I'm having second thoughts about putting it up. My point, supposing I had one, was to compare the relative disability occasioned by loss of function in various limbs. I just thought it was interesting, in a bizarre and twisted kind of way. It wasn't what I would have expected.
I don't mean to scare anybody. (You'll notice the warning at the beginning of the post.) I realize there are people who find it scary to think about the possible consequences of MS. Who wouldn't? Having a progressive neurological disease is scary, for real, but not everybody with MS will wind up where I am. Not everybody will get the opportunity to compare life with no hands to life with no legs.
I definitely don't want anybody to feel sorry for me. What would be the point of that? It doesn't help me, and would just make you feel bad. Don't do it. While I don't consider MS a gift and I'm not typically one to look for the silver lining in every cloud, I do realize that I'm lucky lucky lucky. As much as I would rather they didn't have to, I have an amazing family able and willing to take care of me. I have a place I can live, food on the table. Life is not what I expected it would be, for sure, but it's good. On the whole, all things considered, most days, it's good.
If you post to a blog in the forest and the trees don't comment...
It's all about comments, isn't it? This whole blogging thing?
At first I was fascinated by the hit counter. How many people? How long? How many pages? Where were they from? Who knew that you could land on my blog by entering "moping around with self-pity" in a search engine?
But really, it's all about comments. When I publish a post, I can't wait to hear what my blogger buddies (you know who you are) have to say. I value your opinions and treasure your support. I rarely leave comments in response to your comments because, well, because I'm a lazy slime weasel, but I appreciate them, every one. I do.
I don't often leave comments on my regular round of blogs, probably because I'm a lazy slime weasel. But know that there are times when I open the comment box only to stare at it, feeling there's nothing I could write that could possibly help you or ease your pain. So I don't write anything. I'm much more likely to write "LOL" or "yeah, me too." That emotional support stuff is hard, and I'm lazy. It doesn't seem like writing "I read what you wrote. I hear you" could mean anything, but I know it does. I know I appreciate it when people do that for me. For the times I should've said that but didn't, I'm sorry.
Another runaway blog. I don't know that I had anything particular in mind to write, but I'm pretty sure this is not at all what I intended. So, yeah.
When the weather gets like this, it's probably just as well I no longer have a day job, as I wouldn't be getting anything done. Blue sky, sunshine, warm(ish). Flowering plums. I love flowering plums -- they look like cotton candy trees. Crocuses. Forsythia. Azaleas. Pink! Yellow! Purple! When the first flowering plants are in bloom against a background of evergreens and the sun comes out of the clouds, this place is spectacular.
Spring fever.
Even if spring isn't officially here for another two and a half weeks, it's starting to look like spring to me. As ailments go, spring fever is one I'm glad to have. I might only get it for part of the day; a weather phenomenon Seattleites colloquially call a "sun break". I get it every year, but this is the first year I don't feel guilty about coming down with it because there's nothing else I really should be doing.
I could use a serious case of spring fever right about now. My arms and hands have been even more useless than usual lately. I tried to sign some papers the other day, and found that even the ridiculous scribble I've been using for a signature is beyond me now. We need to arrange for some backup/respite care, so Scarecrow and I aren't joined at the hip 24/7. Despite the lateral support in the back rest of my power chair, it's getting harder and harder to sit up straight. I can't control the chair with the joystick anymore, so I don't go anywhere. And it's getting hard to take a deep breath. Stuff I don't want to think about, and chores I don't want to do.
I don't know if spring fever is on anybody's list of treatments for MS, but it ought to be.
Bareit the whippet joined our pack a year ago last Sunday.
This is how the boys marked the occasion. They get crazy like that sometimes.
Whippets are not like greyhounds. I realize I'm working with a sample size of one, here, but they're just not. It's not just the size difference. We've had small female greyhounds that were not much larger than a large male whippet. It's not just the energy level, although admittedly, other than Ernie, all of our greyhounds have been old age pensioners when they came to live with us. It's more a different perception of reality. Faced with an obstacle a greyhound will, quite sensibly, go around. It would never occur to a whippet to do this. A whippet will go over the obstacle, at great speed, clearing it with feet to spare, without thinking about who might be asleep on the other side. A greyhound could easily do the same thing. They just don't.
A greyhound will happily sit or lay on the same part of the couch a human does, usually taking his half out of the middle. A whippet will sit on the arm of the couch with its forefeet on the seat, or stand on the back, or drape itself in unusual ways over an available human (as illustrated above). Our first experience with this was when we first got Bareit. This was his solution to the problem of one laptop, one lap dog, and one lap:
Their reality is very three dimensional.
When faced with something new, a greyhound, like most sentient organisms, will take its measure from a safe distance. A whippet will walk up and poke it with his nose. If it turns around and makes a scary noise, the whippet will run away really fast. Which it is, fortunately, well equipped to do. Were that not the case, few whippets would survive to reproductive age.
I realize that you can't really generalize from one year with one whippet to all of whippet-kind, but if I were to do that, I'd say I like whippets very much. They're not like greyhounds, but I like them both.
Yesterday was Scarecrow's birthday. I got him a trash can for the bathroom, and a DVD of a movie (Sweet Land) he's already seen. Hey, it's what he wanted!
Lately I keep catching myself dozing off during the day. No, wait, I don't catch myself dozing off; I catch myself waking up after I obviously dozed off, head nodding, jaw sagging, oh, sorry, was I snoring? It's bad enough when I'm by myself, just sitting with my laptop in the afternoon. It's mortifying when I'm with Scarecrow and Tuffy in the evening, reading a book or watching a movie. The other evening we were watching a Dr. Who DVD, the final episode of the season, and I woke up at the very end with no idea what happened. Audio books are a disaster. At least with a regular book, if you fall asleep, you can pick up at the page where you left off. If you fall asleep when you're listening to an audio book, it just keeps right on going and figuring out where you were when you fell asleep is a real pain.
It's such a stereotypically old lady thing to do. I remember being impatient with my grandmother, or my dad, or my mom, when they'd fall asleep watching TV. Scarecrow's dad would fall asleep in the middle of a conversation, practically.
Digression: Scarecrow's dad used to teach at a junior college. When he had an evening class, it was his habit to curl up underneath his desk for a nap in the afternoon. Seriously. Scarecrow's dad could take a nap anywhere. Anyway, on one occasion, an instructor with whom he shared the office was meeting with a prospective student and his parents. As they discussed the merits of the program, they heard an assortment of waking-up noises and Scarecrow's dad emerged from underneath the desk. I love that story. End of digression.
I was such a little snot. There is painful poetic justice in finding myself doing the same thing that once provoked my scorn and ridicule.
It could be an MS thing. Lately I've been really stiff. Any movement entails serious isometrics. It's hard work, and it makes me tired. Maybe it's that. Or maybe it's just getting old. Either way, I don't like it. So, should I try to do something about it? If so, what?
Really, other than the old lady stereotype, what's the harm in falling asleep during the day? It's not like there's anything I particularly need to get done. Why do I need to stay awake, anyway? Mostly, during the day, I'm just trying to find ways to entertain myself. If I'm tired, maybe I should just sleep. That much less time to try and fill. Choosing this option seems kind of nutty, but I'm not sure I know why.
OK, if I don't want to doze off in my chair, what are my options?
The obvious thing to try would be to get more sleep, or better sleep, at night. My schedule here is pretty much tied to Scarecrow's since he has to dump me into bed at night, turn me over from time to time, and haul me out in the morning. I suppose we could give this some thought.
I could explore chemical options. I already take drugs for fatigue, stiffness, nerve pain, depression, and bladder control. After much fiddling, we've got the drugs and dosages balanced so that everything kind of works. Do I want to risk bringing down this house of cards to stay awake through Dr. Who?
Those annoying highly-effective people tell us to arrange our schedule so we take on our most demanding tasks at the time of day when we're most capable. That always sounded like a good idea to me. There are tasks that require focus and attention, and those I can do on autopilot. Of course, when I had a day job, I often wound up spending my most effective time of day sitting in a meeting, or working on a task I could do on autopilot, its priority inappropriately elevated by an imminent deadline. Still, ordering my to-do list by the time of day I could most effectively accomplish a particular task always sounded like a really good idea, even if I never actually managed to do it.
These days, the time of day determines not so much whether I can do a task well, but whether I can manage it at all. You'd think I'd get it by now. Things I can do easily (relatively speaking) mid-morning will be difficult or impossible in the late afternoon. If I put something off to later in the day, even if I really really really mean to get to it, it ain't gonna happen.
In the middle of the morning, most days, the pharmaceutical soup that determines my outlook and energy level predictably has me feeling as cheerful and positive as I'm likely to get. My physical function is as good as it's likely to be all day. Living in the moment doesn't seem so bad. Late afternoon of the same day can be a very bad place. I'm probably stiff and surly and everything is way too hard and I'm f&%king tired of this sh!t. This is not a moment in which I want to spend a whole lot of time, thankyouverymuch.
At a good time of the morning on a good day, when I'm full of energy and purpose and everything seems relatively easy, I still put off tasks to the afternoon even though I know, rationally, that when the time comes, I probably won't be able to do them. I just can't seem to not do that.
The closest I can come to adapting to the drastic difference in what I can do between the good part and bad part of the day is to consciously set my status by the best part of the best time of day. I need to take note of a moment during the day when life is good and I can do stuff and I'm glad to be alive. I need to be able to go back to that moment during the part of the day when things can look very dark and it can be hard to remember that life is good and I'm glad to be alive.
This all sounds embarrassingly new-agey, not to mention whiny and self indulgent, and I'm not sure what my point was, if I had one. And Dragon Naturally Speaking just crashed. Twice. So I guess I'm done.
On days like today, I wonder how I ever managed to get any real work done when I had a day job. There are a bunch of tasks that I need to do something about but can't actually finish, so they don't go away. I need to keep all the balls in the air, remember where I'm at on each task, and what I need to do next. My to-do list (my heroic but inevitably futile attempt to keep cats herded and ducks in a row) looks like acronym soup: ING, LTD, FAFSA, IRS, LoC... and sounds like a recipe for disaster. I'm getting pretty darned whiny about it.
Most of these tasks aren't even interesting or fun. One that's a little out of the ordinary involves calling the power company to tell them my bill is too low. According to them, we have used no natural gas for the past two months. None. Imagine that. Since we have an on-demand water heater and a daughter who doesn't get out of the shower until she runs out of hot water, this seems unlikely to me.
After several weekends of nonstop shoveling, Scarecrow and Tuffy have laid bare the entire living room and dining room floor. We kept more junk than we probably should have, but in our determination to make our belongings fit in the available space, we got rid of a lot of stuff, too. There is one item, however, that has us stumped. Where do we put the passenger seat from the van? It doesn't look that big when it's in the car, but it sits on a riser to accommodate the lowered floor, and when you take it out of it's natural habitat it's ginormous. It needs to be someplace relatively clean, relatively dry, and vermin-free (whippets excepted). We don't have a basement or garage. The seat is too heavy and awkward to haul up the narrow pull-down stairs to the unfinished attic-y space. This being Seattle, the carport and outdoor shed are too damp. It's currently looming over the rest of the furniture in our front room. Bareit thinks it's wonderful.
Assuming we can figure out something to do with the stupid seat, the final step in the remodel-that-wouldn't-die will be getting moved into new office. I jumped the gun a little, putting up a sign I displayed prominently in my office before I retired. I still like it.
We must be having some other place's weather; blue skies, sunshine, the flowering trees getting ready to do their stuff. This is just wrong. It's obviously a mistake. February in Seattle is rainy, chilly, damp, and gray. Mostly gray. Even after living here for 15 years I'm suspicious of spring weather in the middle of February. I fear the bulbs emerging from the soil so early are doomed. I've been permanently scarred by Michigan snowstorms at the end of April. You can't trust this weather. It can't last.
But so what?
The demented whippet is racing madly around the yard, flying through the dog door and into the house with muddy feet, and back out into the yard, sounding like a one-dogpower freight train as he thunders across the deck. Ernie has found a patch of sun. He's trying to get a tan. They're not worried about how long it's going to last. They're enjoying it now. It's good enough for them.
It's good enough for me. I saw a pair of bald eagles out my window this morning. Tomorrow morning I'll bundle up and have coffee outdoors. It may not last, but I'll enjoy it while it does. I didn't want to do my taxes anyway.
Some greyhound friends are planning a walk around Green Lake on the first day of spring. Ironically, it takes forever to make the 3 mile walk with a bunch of greyhounds because so many people stop us with questions, and we talk up greyhound adoption. I'm looking forward to it.
Even if spring is not here yet, for real, it will be here eventually. I'm looking forward to it.
Ernie is 12 years old today. Twelve is not remarkably old for a greyhound, but it's getting up there. He's a little creaky getting up and down, his hind legs are sometimes wobbly, he sleeps more than he used to, and being as how he's a greyhound and greyhounds are world-class sleepers anyway, that means he sleeps a lot. But he's doing OK, considering.
He's had a tough year. Last January his buddy, Iris, died suddenly of a stroke. Then he broke his tail, and had to have it amputated. Twice he's had surgery to remove benign tumors from his thigh, leaving a gnarly-looking scar and saddling him with the name Burger Butt. (OK, I'm the only one who calls him that, but still. It's undignified.) And rather than adopting another laid-back greyhound buddy to keep him company and challenge him to some serious competitive napping, we inflicted a two-year-old whippet on him; a whippet who is cowardly, disrespectful, continually tries to share his bed, and steals his toys. Right out of his mouth.
It really doesn't seem right, somehow.
You shouldn't have to put up with so much, old friend, but we appreciate that you do. Happy birthday, big guy.
I usually use voice recognition software to interact with my computer. It's not the easy way to do it, but for me, at this point, it's easier than the alternative. For a while this morning I was stuck using only voice recognition, and was reminded that there are some things it does only awkwardly, and other things I haven't figured out how to do at all without some recourse to keyboard or mouse.
The keyboard part is easy enough. I use an on-screen keyboard program called Click-N-Type, but there are several others, both shareware and commercial, to choose from. The Windows operating system includes a rudimentary version.
OK, so now I'm relying on the mouse to be both the mouse and keyboard. If I could use a conventional mouse, I'd be all set. Of course, it's never that simple, is it?
I haven't been able to use a conventional mouse for years. I tried switching hands, reprogramming button functions, using different shapes and sizes including several trackballs. Using a mouse was somewhere between awkward and impossible. What I really needed was something I could operate by whacking it with my fist.
After limping along with a series of painfully inadequate solutions, I borrowed a Kensington Expert Mouse from the library. (The King County Library System and Washington Assistive Technology Alliance has a bunch of vision, hearing, mobility, and communication tools that they loan out, so you can try them and see how they work for you before you buy them. How cool is that? Have I mentioned that I love this library?)
I don't know why Kensington calls it a mouse when it's obviously a trackball. I guess that's why I'm not in marketing. Although it's not intended for disabled users, it looked like I might be able to operate the trackball with the heel of my hand, and click buttons by whacking them. I didn't want to spend $99 just to try it -- my hopes had been dashed by promising solutions that didn't pan out far too often for that -- but I was sure willing to check one out from the library, free for nothin'. I tried it for a couple of weeks, it worked pretty well for me, so I bought one.
It's not perfect. The two rear buttons are kind of awkward to reach without functional fingers, and the scroll ring is not as useful for me as I had hoped. The buttons aren't effectively as large as they appear, since you have to hit a fairly small area or they don't click. On the other hand, I can use it in ways I hadn't anticipated. Lately I started putting it in my lap, so I don't have to reach for it. Couldn't do that with a mouse.
I don't intend this as an advertisement for this particular mouse/trackball. Everybody has a slightly different set of abilities and limitations; this solution just happens to fit what I can do. Today. Tomorrow I might be back to looking at what's out there, trying to imagine how I might use it to do what I need to do.
My long-term disability insurance policy requires me to apply for SSDI, and reduces my monthly benefit by the amount I get from Social Security. OK fine, I get that. I applied for Social Security disability, I had my approval letter before my long-term disability kicked in, and they started paying benefits in December. The company that carries my disability policy ought to be pretty happy about that, because it's that much less they have to pay each month. Maybe they are. Hard to tell, with insurance companies.
Anyway, in the course of getting all this coordinated, the insurance company paid more than they owed me, and I have to pay it back. OK fine, I get that. But can they straighten this out by withholding what I owe them from my next benefit check?
Noooooo...
I have to send them a check for the amount of the overpayment. "Future benefits will be withheld until [my] full reimbursement is received."
"A pre-addressed envelope is provided for [my] convenience."
Well, I guess that went about as well as could be expected.
I talked to my mom and dad on the phone this morning. In addition to the usual status updates, I meant to have a chat about their transportation problems. After years of being able to go wherever they want whenever they want, mom can't drive, and dad shouldn't. Their public transportation options are very limited. They find this frustrating. Infuriating, even. I understand that, I really do. But they can't go taking it out on my brother and his kids, who are only trying to help. The plan was to talk about all that.
I wouldn't say the conversation was a total failure. I got an opening when my dad mentioned his visit to the ophthalmologist. Apparently his vision is not appreciably worse than it was at his previous visit, which is not saying a great deal. Apparently the ophthalmologist feels dad's vision is borderline for driving, although the DMV seems to think he can see just fine. Dad told me he only drives around home, he doesn't drive at night, he doesn't drive in the rain (not reassuring -- this is Southern California, it's a desert), he only goes "over the hill" to shop at Costco (a trip of 15 miles each way over a windy canyon road). If I was waiting for the opportune moment, this was it.
"Dad," I say, "I'm with my brother and the kids on this one. I really think you need to stop driving."
He didn't get mad. This is good, we're still talking. He didn't tell me I'm an idiot, which is usually what he tells my brother. We talked about how he hates to impose on family and neighbors for rides, but acknowledged that sometimes letting people help you is a good thing for both of you. We talked about his trip to the doctor yesterday, taking dial-a-ride on the way in and the bus on the way home. It was a nice day, the trip went mostly as planned, and cost $.35. We talked about using the power scooter he bought for my mother to get to and from the bus stop, and about taking the scooter on the bus. He hadn't thought of that, and sounded intrigued by the possibility. The upshot of the conversation was that he said, in the nicest possible way, something like "I know what you think. Thanks for your concern." All in all, I am not feeling like I accomplished a great deal.
My conversation with my mother was even less helpful. When I brought up her problems getting around, she said she'd let me talk to dad about that. When I said it sounded like it was a real problem for her, she said she'd let me talk to dad about it. OK fine. I know this whole situation really makes you mad. But Ma, you've got to stop taking it out on my brother and the kids. They're just trying to help.
"How is Tuffy doing in school this quarter?"
A Chat with Your Mother. I couldn't find a clip of Peter and Lou Berryman, or Cathy Fink and Marcie Marxer, but this rendition is interesting in its own way.
A Chat With Your Mother
(Lou & Peter Berryman)
There are pirates in their fetid galleons
Daggers in their skivvies
With infected tattooed fingers
On a blunderbuss or two
Signs of scurvy in their eyes
And only mermaids on their minds
It's from them I would expect to hear
The F-word, not from you
We sit down to have a chat
It's F-word this and F-word that
I can't control how you young people
Talk to one another
But I don't wanna hear you use
That F-word with your mother
And the lumberjacks from Kodiak
Vacationing in Anchorage
Enchanted with their pine tar soup
And Caribou shampoo
With seven weeks of back pay
In their aromatic woolens
It's from them I would expect to hear
The F-word, not from you
There's the militant survivalists
With Gucci bandoleros
Taking tacky khaki walkie talkies
To the rendezvous
Trading all the latest armor
Piercing ammo information
It's from them I would expect to hear
The F-word, not from you
There are jocks who think that God himself
Is drooling in the bleachers
In a cold November downpour
With a bellyful of brew
Whose entire grasp of heaven
Has a lot to do with football
It's from them I would expect to hear
The F-word, not from you
There's unsavory musicians
With their filthy pinko lyrics
Who destroy the social fabric
And enjoy it when they do
With their groupies and addictions
And poor broken-hearted parents
It's from them I would expect to hear
The F-word, not from you
When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.
So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.
My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.
I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.
Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.
Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.
The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.
There are questions you shouldn't ask unless you're really sure you want to hear the answer. You know the kind I mean:
"How much worse can it be?"
"What else can go wrong?"
"Could this be any more confusing?"
Really. You don't want to know.
As I struggle to keep my power chair from plowing through our newly sheetrocked and painted wall, there are questions I'm tempted to ask my neurologist when next we meet.
What will I still be able to do this time next year?
What will I be capable of next month? Next week?
What is going to happen to me?
That's right up there with, "Do these pants make my butt look big?"
I won't ask, of course. My neurologist is very knowledgeable, but these are questions for which I know she has no answers. And even if she did, I'm pretty sure I wouldn't want to hear them.
"There is no time but the present."
-- Terry Pratchett
-- A Thief of Time
I was all set for an argument. For three months I've been more-or-less happily paying $266 for COBRA continuation insurance coverage, with the ARRA subsidy covering 65% of the cost. Then, browsing around the website for the company that administers the coverage, I see that next month my premium is going up to almost $800. Obviously a mistake -- in December legislation extended the ARRA subsidy to 15 months, and I'm only three months in -- but getting these mistakes straightened out is never easy. Are you kidding? Near as I can tell, this is a company that handles red tape for insurance companies! So I went into this loaded for bear. You know how you get? You've been over and over the argument in your head at three in the morning, getting wittier each time. (Am I really the only one who does this?) I was ready.
It doesn't help that the recent legislation has generated a lot of calls, so I get to wait on hold. Not all that long, truth be told, but still. A cheerful representative, who sounds like she can't possibly be old enough to solve my problem, finally answers. I give her the scoop, and brace myself for the inevitable hassle.
No problem, she explains cheerfully. It's not a mistake. The website doesn't show the subsidized premium, but your invoice will be correct. Then she asks if there's anything else she could help me with today.
The meat'll do to eat and then the hide'll do to wear The meat'll do to eat and then the hide'll do to wear The meat'll do to eat and then the hide'll do to wear I like to say that
Old-timey music is not intellectually pretentious.
And a bonus tune, while I'm on a tear. Devil Eat The Groundhog is my current favorite old-timey tune of all time, and it just happens to have a groundhog in the title. How cool is that? Scarecrow and I used to play it for the Eclectic Cloggers, but this looks like a lot more fun. It's such a typical session at a festival. I love the way the guitar picks it up and joins in partway through. Needs banjo, though.
There are buds on the rather forlorn-looking star jasmine by our front door. It was looking so puny last fall that I wasn't sure it was going to come back this year. I'm happy to see signs of life. It blooms early and smells wonderful. Whenever the groundhog says, spring will be here eventually.
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