Welcome to Jurassic Park

Whenever I think about using a patient lift, I see the scene in Jurassic Park where they've got a cow in a sling, and they're lowering it into the dinosaur pen.

Some of the adaptations I've had to make to accommodate advancing MS-related disability have been fairly easy for me. Not physically, or financially, necessarily, but emotionally; acknowledging that it was a step I needed to take. Cane? Manual wheelchair? Adaptive driving controls? No problem. Makes life easier. Voice recognition software? Sounds kind of cool. Other adaptations, for reasons that are not entirely clear to me, I fought tooth and nail, long past the point where a reasonable person would've given in. Nothing rational, I just couldn't bring myself to do it. Letting someone help me eat? Sorry, no. Power wheelchair? No. No way. Don't want to go there.

Patient lift?

The rehab medicine guy wrote me a prescription for a lift the first time I saw him, over a year ago. I took it, thought "Yeah, yeah, whatever, I'm not even close to needing this," and stashed it someplace. Last time I saw him, he wrote me another one. As much as I'd like to lose this one too, I need to get real. Before we can realistically expect anyone to provide home care backup or respite for Scarecrow, we need to have a lift.

If Scarecrow and Tuffy hadn't been wrestlers, we would've had to resort to this long ago. They're both strong, fit, and know how to move another person around. Even so, as Scarecrow has had to provide more and more of the muscle power, the antics involved in transfers and getting dressed have evolved from a fairly conventional stand and pivot to a series of bizarre contortions that I can't reasonably expect anyone else to manage. It's getting harder and harder for Scarecrow to do it. It's not safe.

So, the lift. We're there. It's time.

Talk about adding insult to injury, I not only have to accept adaptive equipment I really really really never wanted to use, I have to go through the hellish process involved in procuring durable medical equipment to get it. I'm still trying to get a head array control for my power chair, for criminy sake. Not happy. Not even a little bit. Don't tell me how lucky I am to have insurance that will cover most of the cost. I'm not ready to look on the bright side. I need to be crabby for a little while. Don't tell me it's my fault for having put it off so long. I'm not ready to be reasonable.

Welcome to Jurassic Park.

Are You Listening to Me?

On the way home yesterday, there was a piece on NPR about a blogger who asked what you might say to your 20-year-old self, if you had the chance. One of those If I Knew Then What I Know Now sorts of things. As a topic for a blog post, it sounds kind of intriguing. Also self-indulgent, self-absorbed, all about me... what's not to like? Totally my kind of thing.

Not that I think there's anything I could say that would make a dent in my 20-year-old self's hard head. I was a stubborn, self-centered, not particularly likable control freak. If there was something I wanted, I would do whatever it took to make it happen, even if it meant running roughshod over other people. I had no social skills to speak of. What can you say to a person like that?

I know she won't listen. But for what it's worth:

• Most of the things you wake up at three o'clock in the morning worrying about will never happen. If there's nothing you can do about it, right then, go back to sleep. Preemptive worrying is a waste of time.
• You do not need a man in your life. Fortunately the men you have been/will be involved with are all good people; you'll be lucky that way. They are just not right for you. Fear of being alone is not a solid basis for a partnership. Learn to be by yourself and like it.
• You will never in a million years imagine the kind of guy you will eventually wind up with. Never in a million years. You'll be lucky to have him, for sure. He's just not what you would expect. Ever.
• You're not fat. The women in your mother's family, back to the flood, have big butts. There's nothing you can do about it.
• It's OK to be goal-oriented. A certain amount of determination is not a bad thing. That doesn't mean you have to be such a little s#!t about it.
• If there are things you really want to do, do them while you can. I'm just sayin'.
• You don't control nearly as much as you think you do. I know it's hard to let go. Believe me, I do. Try asking yourself, "500 years from now, what will it matter?"

That's enough for now, but I'm not through with you. We'll come back to this. Are you listening to me?

Greyhound Gig

One of the things on my list of Things to Do After I Retire was to volunteer for something. It seemed like a good idea. Isn't that what everybody says they're going to do after they retire? One ought to make a contribution somehow, oughtn't one, even if one isn't paid for it? The trick would be finding something I can actually do.

The obvious victim was Greyhound Pets, Inc. Scarecrow and I have volunteered with this group since we adopted our first retired racer in 1997, but haven't been as active lately as we used to be. We used to host regular meet-and-greets at local pet supply stores and a nearby shopping center, and I can't do that very well anymore. We played music for their annual adoption fair, and I can't do that anymore at all. Their current webmaster has everything under control, thankyouverymuch. I wouldn't be much help at the kennel. It was not entirely clear to me what I could do, volunteer-wise.

As it turns out, GPI needs a newsletter editor.

Hey, I can do that!

Ironically, since we lost our last greyhound a couple of months ago, I'm editing The Bark. I don't think I'm overcommitted. Due to budgetary constraints, it only comes out twice a year and it's only 16 pages long. There are three people working on it. The next issue doesn't come out until November. It's not a high-stress job. I can do this.

It's kind of nice to have a deadline again.

The Lung Vac

Seems like I've had a flurry of doctor appointments lately. Two weeks ago, I checked in with the rehab medicine guy. Since I was whining about being short of breath, he referred me to a guy in the pulmonary clinic. I expected it would be a total waste of everybody's time; they would listen to my chest, decide I didn't have pneumonia or asthma, and send me on my way. The rehab guy allowed as how that might be the case, but said he was referring me to somebody with a particular interest in neuromuscular disorders. I was pretty sure they wouldn't find anything wrong, and if they did, there wouldn't be anything they could do about it. But I went.

So last week I show up at the pulmonary clinic. After some puffing and blowing, they tell me my lung capacity is about 50% of normal, and ask if I have any trouble coughing. Well, yeah, as it happens, I do. Giving in to my penchant for overstatement (hyperbole is the best thing ever!), I tell them I'm afraid if I ever get a respiratory infection, I'm toast. So they make me an appointment with a respiratory therapist.

So on Monday I see the respiratory therapist. After some more puffing and blowing, he tells me if I ever get a respiratory infection, I'm toast. Somehow it's more disquieting, coming from him. He gives me a thing that looks like a purple balloon with a hose, and takes Scarecrow and me through some exercises that he describes as range of motion for the lungs. Then he pulls up a machine that is basically a vacuum cleaner with a mask attached. It blows air into your lungs, then sucks it out. It feels... weird. It sounds like, well, like a vacuum cleaner.

The dogs are going to hate this.

Summer Solstice

Celebrating summer solstice today, the longest day of the year. The longest chilly, grey, dreary, gloomy day of the year.

Don't get me wrong. I love living in a place where it starts to get light at 4:30 in the morning this time of year, and isn't really dark until almost 10 at night. I love living in a place that's green all year round, and ferns grow wild. I realize that the flipside of these things is that you get about 15 minutes of daylight in the dead of winter, and it rains a lot. I realize there is a price to be paid. But really, even in Seattle, by mid-June a glimpse of blue sky at some point during the day ought not be a remarkable occurrence. This year, it is. A friend referred to it as June-uary.

So, today is the first day of summer. I'm ready.

Time Flies...

One year ago today was my last day of gainful employment.

It's not an anniversary to celebrate. I wasn't ready to retire. Although my job wasn't my passion -- I was a tech writer, for Pete's sake -- it was interesting, challenging, and I was good at it. It accounted for much of my self image, provided most of my social interactions, and was a reliable source of nerdy techie toys. And, of course, there was the paycheck.

Sometimes I think I should've thrown in the towel sooner than I did. Other times I wonder how I managed to hang on so long.

Other than the significant and painful drop in income, I expected the transition from working to not to be more painful than it was. Since I was already working in a remote, empty office at Bob's Books and Day Care Center, the only difference in my day-to-day routine was that I didn't do any work. Every morning the realization that I don't have to actually accomplish anything still comes as a real relief. I still feel guilty about not having to do any work, and about feeling relieved that I don't have to do any work.

At first, I spent a lot of time getting disentangled from my former day job, and getting disability insurance and SSDI set up. Since then, I'm afraid I've been lamentably indolent. I have made no inroads on the lists of things I thought I would do after I retired. I expected to be bored, but I haven't been. Perhaps I'm just easily amused.

They say time flies when you're having fun. I must be having fun.

Who Am I Hiding From?

I'm still trying to figure out what anonymity means in the blog world, and how anonymous I really am, and how anonymous I want to be. I don't use my name in this blog or in my profile, but really, come on. This is the Internet. If somebody wanted to find out who 'zoomdoggies' is, it wouldn't be hard. So who am I hiding from?

The majority of people who read this blog -- all four of them -- don't know me. We will probably never meet in person. Why do I need to be anonymous to people who don't know me anyway?

I don't. I'm hiding from people I know.

A lot of the stuff that comes up in this blog I wouldn't talk about with most of my family, friends, or acquaintances. It would feel extremely weird, being with them in person, knowing they had read some of these posts. I couldn't say why that is. It's not that they don't know I have MS. I mean, duh. Somehow, it's easy to expose the gory details to people I don't know and will never know. Sharing them with people I know is hard.

It's not that I try to keep the blog secret or anything. This is the Internet, for Pete's sake. I know Scarecrow reads it, and I admit I consciously try not to write anything that's going to piss him off. A couple-three friends know about it; people who, for one reason or another, I trust to read past all the MS and disability stuff and still be my friend. It seems rather a lot to ask, so I generally don't.

I think this came to mind today because I missed the chance to meet some Seattle bloggers, and a couple of not-Seattle bloggers, live and in person. It sounded like a fun get-together and I was really looking forward to it, but the stars just didn't line up. I'm mildly devastated, but I'm dealing with it.

Anyway, it got me thinking. From reading their blogs, I feel like I kind of know these people, even though I really don't. How would it feel once they went from being kind of anonymous to being people I've actually met in person? Even though I still don't know them, it would feel more like I do. Would thinking that people I actually know might be reading what I write change the kind of thing I'd be inclined to write about?

As it turns out, I won't have to confront that question just yet. Maybe I'll find out next time.

Mighty Hunters

The wolves are on the prowl. Narrow wolves, but wolves all the same.

Tuffy is off at the gym. Scarecrow just left to run some errands. The front door clicks shut. No sooner does the sound of the van fade into the distance than I hear narrow little feet trot down the hall towards the kitchen, circle through the utility room, past the dog food bin, back to the kitchen and dining room, down the hall to see if Tuffy left her door open, back up the hall, a quick sweep through the living room, and back to the kitchen. The sharp click of narrow feet on tile means they were scoping out the kitchen counter. A resonant thump on hardwood indicates that anything toothsome that might have been on the dining room table is there no longer. If any of these are followed by the sound of gnawing, I can only hope their hunt came up empty, and they had to settle for a Nylabone. I can usually tell. Paper towels or napkins shred into little tiny bits without much sound. The rustle of a plastic bag or the rending of fabric is probably bad.

At this stage, the slap of the dog door most likely means they found something interesting enough to haul out into the yard. I really hope they didn't find any toilet paper. If it's Tuffy's underwear again, she's really going to be pissed, but maybe she'll stop leaving her laundry on top of the washing machine.



I suppose I should follow them around, telling them "No!" or "Off!" or "Leave it!", as appropriate, even if I know they'll be back into it as soon as my chair is turned. But by the time I catch up with them the hunt is over, the mighty hunters asleep on the couch, or in a patch of sun in the yard, awaiting the return of the rest of our pack. If they ate something, it's been eaten. If they chewed something up, it's already chewed. If they TPd the yard again, at least it's not raining.

Still in the Middle

There is progress, however slow, on several fronts:

We met with the wheelchair guy on Tuesday. He made a list of the bits we will need...

Whoa, wait... there's a bald eagle soaring outside my window...

OK, where was I?

... the bits we will need to drive my chair using a head array control. The next step is to figure out how much they will cost, and how much of that my insurance will cover. This ball is not in my court.

We met with the rehab medicine guy yesterday. I could (and did) report that we were working on a different method of self propulsion (Yesss!), we were in the process of setting up home/respite care (Yesss!), and the referral to the pulmonologist hadn't happened yet, but it's not my fault. The clinic is supposed to call to set up an appointment. This ball is not in my court.

In a few minutes we'll be leaving to meet one of the home care folks. I'm sure they'll be very nice.

Constant vigilance has prevented Jasmine from causing extensive property damage or incurring large vet bills, but on a couple of occasions Tuffy turned her back on partially-constructed peanut butter and jelly sandwiches. Jaz took them apart and was caught licking off the jelly. But she's very sweet...

In the Middle of Everything

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

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

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

Project: Arrange for backup/respite home care.

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

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

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

Watch It!

Some years before Scarecrow's dad died, he suffered a closed-head injury that left him with a variety of cognitive problems, including severely impaired short-term memory, and social skills that were rudimentary on a good day. I have a vivid mental image of this retired Air Force pilot careening down a grocery store aisle in an electric cart, grumbling at all the little old ladies (this would be Tampa/St. Pete, so, statistically speaking, most of the other shoppers would be little old ladies) to "Watch it!!"

Yesterday afternoon, the wheelchair guy brought a loaner chair outfitted with a head array control for me to try for a couple of days. It has proximity switches in the headrest that control all of the chair's functions -- forward, reverse, direction, tilt, recline, everything. The loaner even goes up and down, which my own chair does not. I realize that, at this point, my options for self-propulsion might be this, or nothing. I realize it will take a while to learn to use, although it's looking like my surroundings could take quite a beating in the interim. I'm sure the controls on my own chair could all be customized to work better for me. While I imagine it would all become second nature after a while, I'm not finding this... ah... intuitive. I'm trying not to be in too much of a hurry to decide I hate it.

Unlike the proportional control of a joystick, with a switch you're either moving, or you're not. If the speed is set so you have a chance of safely negotiating corners and turns, you won't live long enough to get where you're going. Selecting a different speed involves stopping, performing an arcane sequence of taps and bumps to bring up a menu on the display, selecting Speed, choosing a different option, tapping and bumping your way back to the menu, and then proceeding on your way. Wasn't that easy? At least, I think that's the procedure. I wouldn't really know, because banana-slug-speed is still way more than I can safely manage. Although as Patrick at Caregiving Yours pointed out, "Freedom is always fashionable," the additional hardware makes my power chair look even more like a robo-monster than it did before. And, while I'm whining, my neck really hurts!

OK, I admit that one of the less attractive aspects of my personality is that my first response to any new idea, unless of course it's my own, is probably No. I need to keep an open mind. I'll use this contraption until the wheelchair guy comes to reclaim it. I may even get crazy and take it somewhere. You've been warned.

Watch it!

More Distractions

My task for the day was to contact some people about backup/respite home care, and I may yet get to it. I was distracted by a conversation I had yesterday with my mother, about a picture of my grandmother.

My cousin, who sent me the picture, says it was taken when Grandma Helen was 17, which would've been around 1907. It was obviously taken at a farm. As far as I knew, Grandma Helen was a city girl, born and raised in Toledo, Ohio. I asked my mom if she knew how my grandmother came to have her picture taken at a farm.

My mom confirmed that my grandmother always lived in town, but she remembered visiting an Aunt Louise and Uncle John on a farm when she was a little girl. That was the only farm she could think of. Although my mom had, conservatively, a million aunts and uncles, she did not have an Aunt Louise or an Uncle John. She thought they were related to my grandmother somehow.

After a little digging around, it turns out my great-grandmother had a sister named Louise, who married a guy named John. They lived near Toledo in 1920 and 1930, which would've been about the right time. They would've been my grandmother's aunt and uncle. Good enough for me. I'll call the mystery solved.

So that was the distraction du jour. It's only 3:30, so unless I come up with something else I'm going to have to get back to that list of home care referrals.

Wait, I found a couple of bills I need to pay.

Good Company

Coming and going outside my window this afternoon, in no particular order:

• robin
• black-capped chickadee  (I love these little guys!)
• downy woodpecker
• Steller's jay
• Bewick's wren
• Oregon junco

And eastern gray squirrels, of course, careful to stay out of whippet-reach.

Just puttering around. Nothing exotic, even if I could recognize something exotic, which I probably couldn't. But good company.

I really need to put out a feeder.

Easily Distracted

OK. I'm sitting at my desk, dutifully working my way through the list of referrals for home care I got from the MS society. I haven't actually called anybody yet. I'm still visiting webpages, comparing services, that kind of thing.

Whoa!

There's a pileated woodpecker on the tree right outside my window! (Credit where credit is due. I did not leap up and grab my camera for this shot. In fact, this is a male. The bird outside my window was a female. But she was about this close -- without a telephoto lens. Credit for this photo is to Tom Munson of the Idaho Department of Fish and Game.)

Even though they're not uncommon around here, pileated woodpeckers are very distracting birds. They're big and flashy and she was really close and when I'm doing something I don't want to do I have the attention span of a gnat on crack.

(I didn't take this picture either. It's another male.)

Well it's 6:30 and Scarecrow is working on something that smells really good for dinner. Have you ever noticed how it's hard to concentrate when you're hungry? With the long weekend and everything, maybe I'd better come back to this home care thing on Tuesday, when I can  focus.

Yeah. That's what I'll do.

I Know, I Know...

Why do I hate this idea so much? I know I need to arrange for some home health care. Scarecrow is currently doing everything for me -- everything -- 24/7, literally waiting on me hand and foot. He insists he's OK with that, but even he admits we need backup, just in case. If anything happens to him, I'm toast. I know I need to do this. I really hate the whole idea -- we both do -- but I know I need to do it.

OK. So. I dig out the list of referrals I got from the MS society a couple of years ago. I'm looking at the list. From the names, these places all seem to specialize in services for senior citizens. I understand the overlap between services for seniors and services for people with disabilities. I was prepared for that; at least, I thought I was prepared for that. I was perhaps not as prepared as I thought I was. And of three suggested contacts, two are apparently out of business.

That was actually a couple of weeks ago. Yesterday I finally got tired of ignoring the item on my to-do list. I contacted the MS society for a more recent list of referrals. I figured it would take them a couple of days to put it together. It was in my in box 10 minutes after I hung up the phone. I hate it when that happens.

OK. So. I've got a list of referrals from the MS society. I'm looking at the list. From the names, these places all seem to specialize in services for senior citizens. I'm still not prepared for that. I'm going to call one of these places. I might as well start at the top of the list. I'm looking at the list.

In years past, we always spent a good chunk of Memorial Day weekend at the Northwest Folklife Festival. I haven't tried it since I've been in a wheelchair. It gets pretty crowded, particularly if the weather is good. I'm not that big on crowds in the first place, and in my experience places that are crowded, standing up, are claustrophobic sitting down. I did Pike Place Market on a sunny summer afternoon a couple of years ago when my brother was in town (and ran over somebody's foot, to their considerable and noisy dismay), but I haven't been brave enough to try Folklife. Maybe, if I get a better way to drive my chair, I'll brave the butt forest next year. If I run over somebody's foot, at least I'll do it on purpose.

While I'm at it, here's a shameless plug for the group I used to dance with, and later played music for. The Eclectic Cloggers are dancing on the International Dance Stage at 1:50 PM on Monday (May 31). Music by Minnie Pearljam. If you're in the neighborhood...

OK. So I'm looking at the list. It's six minutes to five. Scarecrow says he's ready to go home.

Tomorrow for sure.

Why do I hate this idea so much?

World MS Day

Second annual.

woot

Look, I am indebted to organizations that raise awareness of MS, and raise money for research, and all that. They do good work. I appreciate it. I do. I asked my local MS Society chapter for help on a couple of occasions, and got it. A couple of years ago I took advantage of an aquatics program they sponsored at the local YMCA. They sent me information a couple of times, and I appreciate the resources they make available through their web site. I owe them. I know I do.

I guess I feel like I should be more of a booster. It just seems that in the great majority of my interactions with MS organizations, they are asking me for money. There's nothing wrong with that. I know fundraising doesn't just happen. If you want to raise money, you have to ask for it.

Please forgive me if I can't get more excited about the second annual world MS day. I just feel like MS has already taken everything I had to give.

Stop Me if You've Heard This Before

My dad tells the same stories, over and over.

It's hardly surprising. He's almost 90, after all. He's got a lot of stories to tell, and although I've heard most of them before, occasionally he comes up with a new one.

I, on the other hand, am not almost 90, even though some days I look it, and most days I feel it. Still, I'm becoming painfully familiar with the fixed smile and glazed look that Scarecrow and Tuffy get when I start to tell a story they've already heard, but they're too polite to say so. Nothing makes me feel old and absent-minded like getting caught repeating myself. Did I say that already?

Lately I find I forget what I've written about in previous blog posts. The titles don't even sound familiar. I tell myself it's OK. If I repeat myself, I'm just being considerate. After all, one can't assume that anyone who might be reading a blog has read every previous post. If being considerate happens to coincide with being absent-minded, this is one circumstance where I guess it's OK. There are way too many, after all, where it's not.

So if you've heard this before, don't stop me. I want to hear it again.

Celebrating the twentieth of May

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.)

So, May 20th. Happy Liza Doolittle day.

Why Do We Have So Many Dog Beds?

Whippets have no concept of personal space.

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.

The Red Queen and the Wheelchair Guy

"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.

Bareit's New Buddy

Timing is everything.

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.

Dancing at Dawn

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.



Well, somebody's got to do it.

Ernie's Last Race

Ernie (MBJ's Profit) 16 February 1998 - 30 April 2010

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 Mouse in Our House

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.

Calf's Foot Jelly

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.

Better Than Nothing

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.

The Done Thing

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.

Word Rage

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.

Well, shoot.

I still don't like it.

-- Mme. Crabbypants

Are We Through Yet?

The NPR spring pledge drive is still going on.

And on. And on.

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.

Sheer Perversity

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.

Sugar Buzz

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?

Can You Hear Me Now?

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.

Monkey Mitts

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.

Accessibility For All

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.

Adventures on eBay

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.

Blogging While Bummed

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!

Beginnings and Endings

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.

When We Get Bored, Bad Things Happen

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.'

Schedule Malfunction

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!

Another Day in Paradise

"Just another day in paradise!"

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.

A Fluffy Gray Weekend

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

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

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

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

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

Aromatherapy

'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.

No Hands

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.

Oh what the heck.

No Comment

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.

Spring Fever

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.

Anniversaries

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!

Last year I got him a whippet.