You Could Be a Dog on the Internet

There was a piece on NPR the other morning about the difference between your Internet persona and the person you really are. In addition to places like Second Life, where you consciously create an avatar who may or may not be kind of like the real you, there are the tracks you can't help but leave behind in e-mail, IM, blogs, Facebook, Twitter, and all the other kinds of e-communication that people use to form an image of what you must be like.

That got me thinking about what I must seem like to people who only know the e-me. What do you reckon? Dour? Sarcastic? Cynical? Not misleading, I'm afraid. That's the real me. Guilty, guilty, guilty.

I've had people tell me I seem shy. I am, a little, but I don't think that's what they're seeing. It's just that my mom always said, "If you can't say anything nice, don't say anything at all." I frequently don't have anything nice to say. Similarly, I'm frequently rude, although that's not my intention. At least not usually. I'm just oblivious to the finer points of social interaction. I'm not great fun at a party.

So the e-me is pretty much the same as the real me, as unpleasant as that may sound. Or rather, it's the same as the real me used to be. On the Internet, my arms and legs work as well now as they ever did.

Although this blog is all about MS and disability (more than I would like, truth be told), elsewhere on the 'net I probably look pretty normal. Corresponding with people I haven't seen in person since before MS really started to kick my butt, it usually doesn't come up. In most contexts, having MS shouldn't matter. I wouldn't say I'm hiding behind my able-bodied Internet persona, exactly. It just doesn't come up.

As much as I like being able to preserve a part of my life where MS just doesn't come up, it can make meeting people in person kind of awkward.

There is a plan in the works to get together, real life in person, with a couple of people I used to work with. In fact, they were the reason I moved from Michigan to Seattle in 1995. They're both smart, talented, funny, well-read and widely-traveled. They make me feel kind of ignorant and hopelessly provincial. I like them a lot. They have both known I have MS for about as long as I have, but I haven't seen either of them in person for several years. When last we met, I was a lot more capable than I am now. Although we've kept in e-touch from time to time, my physical abilities, or lack of same, just didn't come up.

So when we meet, acknowledging the differences between my Internet persona and the real me will be kind of awkward, but we'll get past it, then Scarecrow will conduct a guided tour of our remodeling project. We'll catch up on the gossip at the places I used to work. Our dogs will convince them that whippets are unmannerly and disrespectful. We'll resolve to meet up again, which may or may not happen. It'll be fun.

Then I'll go back to being the e-me.

I Love the Smell of Hops in the Morning

One of the things I will really miss about not coming in to Bob's Books and Adult Day Care every morning is the smell.

The warehouse that accommodates Bob's Books also houses a craft brewery, and brewing beer is aromatic business. Some mornings we're greeted by the fresh scent of hops, herbal and citrusy. Some mornings it's yeast. Some mornings it's rich, sweet, toasted malt. The lovely fat essence of organic esters. The ingredients of a wholesome, nutritious beer that will really stick to your ribs.

I'm told that not everyone appreciates the whiffy aspects of brewing beer. My mom says my granddad used to brew beer, and my grandma wasn't crazy about the smell. Or the occasional bottle that would explode in the basement. I've always enjoyed the olfactory experience, myself. Good thing, because Scarecrow has been a homebrewer for 20 years, and the process is every bit as aromatic when carried out on a smaller scale. While I could do without the sticky malt residue that covers every surface in the kitchen after a brewing session – Scarecrow is a congenitally messy guy – I've always enjoyed the smell. Well, that, and the beer. The beer is almost always good. (If you've never tried it yourself, it's not hard to make good beer. Scarecrow's first batch was one of his best ever. What's hard is making beer that is consistent from batch to batch. But it's almost always good.)

Another advantage to having a brewery next door is that Scarecrow could get yeast from them. He'll miss that.

Update from previous post: Sparky is planning to spring my pop from the joint this afternoon. Apparently he's looking and feeling better, although he's very weak, easily tired and a little confused. They never found out where he was leaking this time, but seem to think they got it plugged up for now.

I tell you, gettin' old is not for wimps.

Pop Sprung a Leak

My dad is back in the joint.

My brother (I'll call him Sparky – he's an electrician) called the other day to say that dad was weak and a little confused. Like, too weak to get out of bed. They got him in to the doctor, and found that his hemoglobin was way low. Again. He's sprung another leak.

They packed him off to the hospital, where they filled him up with blood. After that, Sparky said he was looking and sounding better. Now they need to find out where he's leaking.

Dad has a history of bleeding from holes in his gut. It has almost been the end of him on several previous occasions. If that's what it is, this time they probably caught it early. Who knows? He's 90 years old, for Pete's sake. He's got a lot of miles on the chassis. They're keeping him in the hospital for tests.

My mom, who is 88 herself and has more than her own share of medical problems, seems to be getting by on a combination of willful ignorance and denial. Sparky said she had a total emotional meltdown when he talked to her on the phone this morning, but by the time I called she had all the input filters firmly back in place. Whatever works, I say.

Whatever works.

House of Cards

The trouble with a house of cards is it's awfully darn fragile. A mishap that would barely cause a ding in a sturdier structure will likely bring the whole thing down in a heap. It's a precarious balancing act.

The house of cards at Bob's Books and Adult Day Care is coming down at the end of the month. Bob is closing up shop. Scarecrow is looking for a job; either one that will allow him to care for a disabled partner on-site, which seems pretty unlikely to me, or one that pays well enough to have someone else take over the job.

By unfortunate coincidence, my COBRA subsidy ends at the end of the month, too, so my health insurance will go from pretty reasonable to pretty scary. After three months of that, continuing the policy will cost 150% of what my employer pays. I'm pretty sure we couldn't do that, even if Scarecrow still had a job.

I knew from the beginning when the COBRA subsidy would end. I knew the situation at Bob's Books, while more open-ended, couldn't last forever. They were nice while they lasted. We were lucky to have had them for as long as we did. I'm grateful. I really am.

So. What next?

I'm going to take a couple more days to get over feeling like I just swallowed a large rock. Read some escapist literature. Watch some really stupid movies. Then I'm going to balance my checkbook. It's a control thing. After that, I'll take a look at the budget. Just to see where we're at. Knowing is better than not knowing, kind of thing.

We can do this. There are a lot of people who are a lot worse off than we are.

It'll be an adventure.

Ode to a Marmot

Happy Groundhog Day!

They say Punxsutawney Phil had to dig out of a snow drift today before he could undertake the annual search for his shadow, which was nowhere to be found.

I have no idea what that means. I just like marmots. And old-timey banjo.


“Ground Hog” by David Johnson
from Smithsonian Folkways

Invalid

I am really feeling very sorry for myself. The display on my nearly brand-new laptop went south on Saturday morning. Fortunately everything else still worked, so I could plug into an external monitor. Not easily portable, but better than nothing, especially since I didn't have anywhere I needed to go. Yesterday morning Robert the Computer Tech appeared at Bob's Books and Adult Day Care with a replacement display which was, alas, the wrong one. If the problem were a loose connection somewhere, we were hoping that just putting it back together would fix the problem. No joy. The right part should get here in a couple-three days. In the meantime I could use a dim, fuzzy, flickery old 15-inch CRT monitor that Scarecrow liberated from the file server here. This morning a different computer tech shows up, this time with the correct display. By the time he's finished, the display works, but the webcam doesn't. Of course, we didn't realize the webcam didn't work until after he left. After another seemingly interminable troubleshooting (duh?) session, they're sending another computer tech out tomorrow.

In addition to making me whiny, unpleasant, even downright cranky, this situation has me thinking about how much I rely on a great deal of human, mechanical, and electronic assistance to do pretty much anything. Does that make me an invalid?

Even though I can be, I admit, kind of fussy about words and this is something about which otherwise temperate people can get pretty darned touchy, I mostly don't much care about the word used to describe my current inability to do everything I used to do.

Some people refer to MS as a sickness, an illness, or a disease. I guess it is, but those feel wrong to me. I generally don't feel sick, or ill. And 'diseased' sounds so icky. But the words don't offend me.

A guy I met whose wife has MS was incensed that people would refer to her as 'handicapped', thinking it connoted begging, with cap in hand. Although I don't think that's the derivation of the term, I guess a lot of people share his view, and it's not the politically correct thing to say. I can't get that worked up about it, myself.

I've seen references to people who were 'differently-abled.' While I understand the desire to come up with a term that no one could possibly find offensive, this is just wrong. To me, it implies that these people acquired different abilities to compensate for the normal abilities they don't have. Maybe it's just me, but I sure didn't get any different abilities. Still, if you want to use 'differently-abled', knock yourself out.

At the other end of the PC spectrum, there's 'cripple' or 'crip.' I can refer to myself as being a crip, and frequently do. (When I started this blog I thought about calling it 'Tales from the Crip', but it's been done.) Fellow crips can use the term, in sardonic recognition of our shared predicament. It's ok for my family to call me a crip, because I know they mean it in the nicest possible way. At least I think they do. But it's kind of like the 'n' word; you can only use it if you belong to the club. You gotta draw the line somewhere. But depending on who's using it, I'm OK with crip.

You could talk about an 'impairment' or a 'disability'; either of those is fine with me. I realize that in addition to occupying different places on the spectrum of political correctness, and possibly causing different levels of offense in the population to whom they are applied, the words used to describe physical or cognitive limitations all have slightly different definitions, and different shades of meaning. Pick one that works for you.

The term 'invalid', however, gives me a little trouble. One definition, according to Merriam-Webster, is:

Noun: One who is sickly or disabled
Adjective: suffering from the disease or disability
of, relating to, or suited to one who is sick

OK, I get that. Aside from my previous reservation about being labeled sick, I can't really object to anything here. My problem is that when I hear the word 'invalid', what I hear is 'in-valid.' As in:

Adjective: not valid:
a: being without foundation or force in fact, truth, or law
b: logically inconsequent

Logically inconsequent? I don't think I'm ready to go quite that far. I may be disabled, but I need to think I'm still valid:

1: having legal efficacy or force; especially: executed with the proper legal authority and formalities
2a: well-grounded or justifiable: being at once relevant and meaningful
2b: logically correct
3: appropriate to the end in view: effective

And my favorite, although I admit I don't exactly see the relevance:

4: of a taxon: conforming to accepted principles of sound biological classification

There are lots of words one might use to summarize my particular combination of cans and can'ts, and really, I'm just not that touchy. I know that talking to somebody with a disability can be awkward, and most people mean well.

But invalid? In-valid? I'd rather not go there. Nope. Not me. Not yet.

Hardware Heck

So, OK, I'm sitting at my desk this morning, reading my e-mail or whatever, just minding my own business, and the display on my brand-new laptop begins to slowly fade to white. It then gradually darkens to a kind of streaky gray.

Now, I'm not a hardware person, but this is not looking good to me.

It's not really a brand-new laptop, truth be told. It's refurbished. You know – just as good as new, but a lot cheaper. The place I used to work always bought refurbished machines, and the IT guys at a software company should know, right? Since they're the ones who have to fix them if they break? I've had pretty good luck with refurbished computers in the past. Although, now that I think about it, I did have the motherboard replaced twice on my last one. But that was a long time ago. It's run without a hitch since, and Scarecrow has been using it since his (refurbished) machine died. And fortunately the IT guys where I used to work also recommended buying the 1-2 day on-site repair service, you know, just in case.

So, after a long troubleshooting session with a very nice man who spoke impeccable English in a call center in India that needs a little better acoustic insulation between cubicles, someone will be out Monday or Tuesday to fix it. And, in the course of troubleshooting, the nice man suggested connecting the laptop to an external monitor, which I wouldn't have thought to do. Apparently the problem is the display; the computer works fine. The monitor makes the laptop somewhat less portable, but it beats being without a computer until sometime next week.

Isn't it wonderful the way technology enhances our lives?

St. Scarecrow

On the radio this morning I heard a piece about a guy who had an unfortunate encounter with an officer of the law. I wasn't really paying attention so I didn't catch the details. Apparently Bad Things Happened, and the guy got his head slammed into a concrete wall. He is now totally and permanently disabled.

I started listening when they talked about how his wife has to take care of him 24 hours a day. She has to feed him. She sleeps in the same room, because she has to wake up three times every night to turn him so he doesn't get bedsores. She's a saint, they said.

Fortunately the $10 million she gets from the lawsuit will make it possible for her to care for her husband for the rest of his life.

Unfortunately for Scarecrow, I did not have the foresight to acquire a disability that is somebody else's fault. He feeds me, he wakes up three times every night to turn me over, and he does a lot more besides; I will need this help for the rest of my life, and nobody is going to pay him $10 million to do it. Yet it appears he's willing to do it anyway.

He says I would do it for him if our roles were reversed, and while I like to think that's true, I'm not really sure I'm that good a person. He's just a good guy. I wouldn't say he's a saint. He doesn't believe in them anyway. But he's a really good guy.

So, in lieu of $10 million, I thought I should tell him that I love him and I appreciate everything he does for me. Since it seems kind of self-serving to tell him this while he was actually doing something for me, I wanted to wait for a time when he wasn't. The opportune moment, kind of thing. I had to wait a long time. I hadn't realized how much of his time he spends doing things for me.

The beginning of our care partnership was so gradual that I can't remember how it started. He just started helping me do things that were hard for me. Some tasks I did not want help with, no way, no how. (I can sometimes be a little stubborn that way.) He allowed me to struggle, and when I finally gave up and let him help, he never asked why it took me so long. The number of things I resisted assistance with were so few compared to the number of tasks that somehow Scarecrow assumed without my ever realizing it. When someone reads your mind so much of the time, how irritated can you get when they occasionally provide help you don't want?

As Scarecrow started helping with more and more of the things I used to do for myself, we evolved some very complicated procedures that I can't imagine anyone else ever figuring out, and even if they could, I can't imagine anyone but another ex-wrestler being able to perform. Even for $10 million.

I'm glad that woman and her husband were compensated for the injury that was done to him, but nobody's going to pay Scarecrow $10 million to take care of me. I guess he's OK with that.

Good Enough

Sometimes I read something that just stops me in my tracks. It might be prose so perfect, so beautiful, it's like music. It might be an essay that is so insightful and elegant, so well-written, so much better than anything I could ever do even if I worked at it for a million years, which of course, being a lazy slime weasel, I wouldn't do, that I'm embarrassed to be caught trying.

After I read something really good, I am not inspired to write anything myself. Quite the opposite. It takes a while before I feel like howling again. I can't come up with anything good enough. I don't really have anything much to say, and I'm not that good at saying it. I can't offer knowledgeable comments on events of global import, or pithy observations on the human condition, or erudite analysis of, well, anything. I rarely have exciting events to recount, even setting the bar for 'exciting' pretty low. Nothing momentous or noteworthy. I'm tired of writing about MS (actually, I'm always tired of writing about MS and MS-related stuff; it is, however, a regrettably abundant source of topic material), the dogs haven't done anything despicable (another regrettably abundant source of topic material), and there's nothing much else going on. Just life.

But, you know, it's my life. And I can write about it better than anybody else.

It's good enough.

As usual, somebody else already said what I think I'm trying to say better than I could.

A BETTER VOICE
©1990 Joel Mabus
originally on the album Firelake

Sometimes I wish I had a better voice
to sing my song for you -
A voice so brilliant, rich and clear -
Soaring and gliding through the air,
Hanging the melody in your ear
The way good singers do.
But my voice cracks like a back porch chair,
Growls and groans like a big black bear,
Full of whispers, kinks and snares
And I sometimes miss the key -
But nobody sings my song like me.

(Joel Mabus is an amazing musician, singer, and songwriter from Michigan. If you ever get a chance to go hear him, do yourself a favor…)

Well Now, That Wasn't so Bad, Was It?

Last Thursday night, Scarecrow went up to the high school to keep score at a wrestling tournament. And I stayed home.

It wasn't such a big deal, really. He wasn't gone that long. It was mostly an excuse to do what we've been meaning to do for years, but kept putting off. We had a home care person stay with me while he was gone.

Neither of us wanted to do this, but we need to have a backup plan in place in case anything ever happens to Scarecrow. Or, you know, he just needs a break. From me. Or whatever. So we'll have this agency send somebody to help out for a couple of hours every now and again, just so we've got somebody we can call if we ever need someone to take over for Scarecrow. For whatever reason.

So we did it. They sent a perfectly nice young woman who seemed willing to do whatever I asked of her. She fed the dogs. She reheated some leftovers, and fed them to me for dinner. She swept the dog hair and dust bunnies off of the floor, and, without being asked, took a damp mop to the kitchen tile, which was really pretty disgusting. That all took, I dunno, maybe a third of the time she was here. I'm just not very good at asking for help. I couldn't think of much for her to do.

No. That's not true. There was plenty to do. There was laundry. She could have trimmed my nails. I could have had her help me clear the detritus off the desk. There was plenty to do. I just felt bad about asking her to do it. Even though she was perfectly willing and cheerful, and that's why she was there, for pity's sake! Fortunately, I didn't need to go to the bathroom.

I'm telling myself I'll work up to it. This should be a real milestone, finally getting set up for home healthcare, but it doesn't feel like we're there yet. I need to learn to do this. I need to stop feeling like I should be entertaining the healthcare aide. We don't need to chat. I don't need companionship or conversation. I need to learn to ask for help with chores. I need to learn to let someone help me with those icky personal care things. I can do this.

There's another wrestling tournament next Tuesday. I'll need to be ready.

Who knew it would be this hard?

Communicado

I'm communicado again, more or less. That is, after having been pretty much in-communicado for the last couple of weeks. Having to choose between a keyboard (= voice recognition software) and a mouse (= head tracking software), and having to disable this before I could enable that, and applications crashing right and left, was making me kind of cranky.

Then Scarecrow's laptop died.

So I've got a machine that can't do what I need to do, and Scarecrow's got no computer at all. Tuffy's been using the laptop my former employer let me keep – that's how old it was – since her laptop was stolen, but it's running the wrong operating system. Before Tuffy took it over, I replaced the pathetic Windows Vista with Fedora, which I really like but Tuffy… ah… doesn't.

Everybody has their priorities. Some people expect to buy a new car every couple of years. I've never done that. I'm not a car person. For me, a car is just a way to get where I'm going. As long as it can manage that, I don't really care how old it is. Our four-year-old minivan still seems pretty new. We sold the car I used to drive, and since Tuffy doesn't drive, we're a one car family.

We don't have a travel budget and we don't eat out much. We don't have an entertainment center or a big-screen TV. No TV, no cable subscription or satellite dish, no game console.

We have our fiscally irresponsible hobbies. There are the dogs, for example. And we are a three computer family. At least.

So we bought a refurbished laptop, and we're playing musical computers. I'm shifting my stuff onto the new laptop, and Scarecrow and Tuffy are negotiating the allocation of the remaining two machines.

It will take me a while to figure out this new operating system, get everything installed and configured and what all. But I'm communicado again. More or less.

Decisions, Decisions

I've spent the last couple of weeks trying to decide which I need more: a keyboard (that is, voice-recognition software), or a mouse (or the head tracker equivalent).

Not surprisingly, both voice-recognition and head tracker mouse software place considerable demands on processor resources; resources which my aging laptop does not possess in any abundance. The CPU, which was quite the ticket in its day, is just not up to the task. It was doing pretty much OK with Dragon NaturallySpeaking, as long as I was using a regular hardware mouse. However, replacing the regular mouse with head tracker mouse software, which is a total CPU hog, was just asking a little too much. They would both load, and run, but I couldn't... do... anything. If I opened a browser (Firefox) or an e-mail client (Thunderbird), they would crash. Same for my database and checkbook applications. Nothing spectacular, just...*poof*

By alternately disabling DNS or the head tracker I might be able to get through checking my e-m*poof*

Or not. Sending e-mail wa*poof*

I tried balancing my checkbook, but th*poof*

OK. I need both a keyboard AND a mouse, or their logical equivalents. I want both. And I need to have enough system resources left over to run applications without crashing.

Software is available these days that can do ever more magical things, if you've got the hardware to handle it. It's shallow of me, I know, but one of the things I miss about working for a software company was always having a computer that was fast enou*poof*

This is not a great time to buy a new com*poof*

Well cr*poof*

Welcome Winter!

We're celebrating the winter solstice today. If you don't observe one of the many religious holidays that occur this time of year, it can be a little hard to come up with a "How to Celebrate" template. Fortunately for us, a lot of the holiday symbols aren't inherently religious. Evergreens? Check. Holly? Check. Mistletoe? Check. Wreaths? Check. Sparkly lights? Check. Frost? Snow? Icicles? No problem. Presents? Anytime. Over the years we've incorporated these things with other bits from here and there into a holiday observation of which we have become rather fond. 

One of the things we do, and I don't remember whose crazy idea this was, is to experience the shortest day of the year by not using artificial light. We get up when it's light which, here in the Pacific Northwest, means we get to sleep in. We use whatever light is available during the day, and plan to be done with whatever we're doing by the time it gets dark. Since, here in the Pacific Northwest, this comes pretty darn early, the person responsible for the holiday dinner has to do some pretty intricate planning. If nothing else, by midmorning you realize that it's pretty much a reflex to turn on the light when you go in the bathroom.

As it gets dark, we listen to music because there's not much else you can do without turning on the lights. When it's dark, we light the candles, light the fire, put the tin sun ornament on the tree, open the wine, exchange presents, eat dinner, and all that.

It may not be exactly what everybody else celebrates this time of year, or exactly the way anybody else celebrates it, but we're OK with that. For us, it's all about love and family and eating too much and presents the recipient will need to return and the days starting to get longer. Not necessarily in that order.

It's getting dark. I wonder how Scarecrow is doing with dinner?


...rise up, Jock, and sing your song,
For the summer is short and the winter long,
Let's all join hands and form a chain
'Til the leaves of springtime bloom again.

Stuff

The other day, before I put up the post about Tuffy's birthday, Scarecrow observed that there wasn't much new material on my blog this month. Since that was true, I sat down (virtually speaking) and wrote something.

Reading it over (yes, I do that, even though it probably doesn't seem like it), I found this:

"This is all sounding rather whiny and petulant, and I don't mean it that way. Whatever point I might have been trying to make, it appears I totally missed it. In fact I should probably scratch this post and start over, but I can't think of anything else I really want to write about and at least one of my four readers is obviously restless so I'm going to post it even if I sound like a whiny jerk...."

Wait wait wait. Wait. Hold on just a minute. I'm thinking I shouldn't post what I've just written, but I'm about to do it anyway? How stupid is that? Am I really afraid "my readers" will be disappointed? Oh please. I really need to get over myself. Besides, writing for readers other than myself starts to feel an awful lot like work. Been there, done that.

So it's been kind of a thin month, content-wise, on this blog. You can thank me later.

Instead of scribbling, I've been kind of preoccupied with holiday shopping.

This time of year isn't really about Stuff. I know that. It's shallow of me to admit how much grief my gift list causes me, when it's the thought that counts, it's about love and family and being together and pretty soon the days will start getting longer. But there it is.

I have never been one of those people who can always think of the perfect gift, the one that the recipient didn't even realize they wanted until they got it, after which they can't imagine ever having lived without it. That kind of gift always involves an element of risk. I'd rather forgo the possibility of giving the recipient a pleasurable surprise if it means reducing the likelihood of witnessing speechless dismay. Give me a wish list every time.

Tuffy's good that way. She's got a wish list online, with links to everything from boxing gloves to cool chopsticks to sparkly hairpins to rubber boots. She updates it regularly. Lots of choices, but there was her birthday, in addition to the whole solstice winter holiday thing.

Scarecrow is more of a challenge. Throughout the year he mentions stuff he would have on his wish list, but come December I'll be darned if I can remember what he might have been lusting after in March or July or October.

I'm still working on it. No rush.

Birthday Girl

Today is Tuffy's 21st birthday.

I guess there has to be some arbitrary age at which people are considered adult, and twenty-one is as good as any. It's not like she's really much different today than she was yesterday. In some respects she's been amazingly adult since she was five years old. In other ways I wonder if she'll ever grow up. But, officially, today's the day.

I don't know what I expected. It seems like a surprisingly unremarkable day. From my perspective, at least, something of an anti-climax.

Maybe I'm a little slow, but it wasn't until I first went into labor, 21 years ago, that I was struck by the terrifying realization that I was about to do something I could never undo. From that point on, I would always be a parent. That's when it became real. At that point, I couldn't possibly imagine her turning 21. Or 18. Or starting school. Heck, I couldn't imagine her ever being big enough to fit into six month size baby clothes. But if time flies when you're having fun, I must've been having a blast.

She's grown up to be a remarkable person -- beautiful, smart, talented, funny... I guess parents always say that about their kids. But she really is. She's athletic, like her dad. Like me, she believes that anything worth doing, is worth doing fanatically. She doesn't much like dogs, so I guess in some ways she's her own little creature.

Seems like we ought to mark the occasion somehow, although I'm not sure we'll even see her today. She was still in bed when we left for work, and she'll be at the gym by the time we get home. Her friends want to take her out to party, even though she doesn't drink.

I've been trying to think back to what I did when I turned 21, but I really don't remember. I know that by that time I had already made a couple of serious life mistakes, ones that Tuffy has thus far managed to avoid. Maybe that's because we were really good parents... but I doubt it.

Happy birthday, kiddo. Happy birthday.

PFM

Long ago and far away, an eager young tech writer asked a senior software developer what protocol a server used to send configuration settings to a client device.

"PFM," the developer replied.

The tech writer looked blank.

"Pure F#@kin' Magic," he explained.

Smartass.

But now, many years later, I've come to believe he was probably right. Technological advances notwithstanding, I think a lot of things still rely on that protocol.

As we were leaving the UW Medical Center the other week, a woman was watching as I drove my power chair into the elevator and turned around.

"How are you doing that?," she asked.

"PFM," I wanted to reply. But I didn't. I explained about the head array control.

It might not be magic, exactly. I leave gouges in the walls and  dents in the furniture. I go backwards when I  meant to go forward, and vice versa. I whine and complain about how it makes my awkward, clunky power chair even more awkward and clunky. In spite of all that, I'm using it. I'm glad to have it. I'm keeping up with the Red Queen. That's pretty magical.

My latest adventure in assistive technology, and the reason I've been away from this blog for a couple of days, has been a search for a way to control a computer mouse without using my hands. I can get by without a keyboard. For entering text, Dragon NaturallySpeaking does fine. For moving around the desktop, it's beyond awkward. I'm not the first person to run into this problem. There are solutions. It's time to start checking them out.

The most likely-sounding options use head tracking. A webcam tracks the position of your head, and moves the cursor accordingly. They can be pricey, but there's an open-source option. I've spent the last couple of days playing around with it.

Like the head array, you wouldn't use it if you could use a regular mouse or trackball. It's a major drain on system resources. And something keeps crashing Firefox and Thunderbird. But it kinda works. No hands! How cool is that?

PFM.

Just Another Day in Paradise

This photo was taken around 1930 in my grandfather's grocery store in Toledo, Ohio. Standing by the counter to the left of the picture, in the long apron, is my uncle Willie. Behind him, looking proprietary, is my grandfather. To his right is one of the neighborhood kids, and then two men who sold produce to the store. The guy in the back corner is my uncle Leon. The young man at right, wearing knickers, is my dad, the baby of the family. He turned 90 yesterday.

A WWII veteran, he went to the University of Toledo on the G.I. Bill and moved to Southern California for grad school at Cal Tech. A few years later, he and my mom bought a house near the ocean. In those days, mere middle-class mortals could afford such things. My brother and I grew up in that house. My mom and dad still live there.

He got up early yesterday and went for a walk, as he does most mornings. He went to the beach and back, a walk of maybe a mile, including a significantly steep hill. He says he has to stop and rest several times on the way up, but still. Mom says when he goes all the way down to the beach he sits in a chair for the rest of the day, but still.

He has his share of health problems. In May 2008 he was in intensive care with three holes in his gut. Nobody expected him to live through the night. He worked his way back, a little at a time. He still can't do everything he used to do, but he can do a lot more than anybody ever expected. The man is a force of nature.

Whenever I ask him how things are going, he always says, "Just another day in paradise!" He says every morning when he wakes up he thinks, "Another day! And I'm here to see it!" When I was living at home I sure don't remember my dad being such a relentlessly cheerful guy. For whatever reason, he seems to have come to really appreciate what he's got, and not waste much time thinking about what he's lost. Maybe I could learn a thing or two from the old guy yet.

Happy birthday, Pop.

Giving Thanks

“Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.”
-The Buddha (Prince Gautama Siddharta, 563-483 BC)

To blogger buddies in the United States, happy Thanksgiving. To blogger buddies elsewhere, happy Thursday.

Dog Years

In response to the folks who read my last post and tried to convert my age in dog years to people years, there really isn't a simple linear equivalence. Dogs are sexually mature at six months to a year, which might correspond to human of about 13. They're physically mature at two or three years, comparable to a human in their late teens or early 20s. They're mentally mature at, well, don't hold your breath. For either species. A dog might start to show its age at 7 to 9 years, like a human who can start taking advantage of the senior discount at the movies.

But it's not that simple. While small dogs tend to mature faster and live longer than large dogs, the relationship between size or weight and longevity isn't linear, either. Some breeds typically live longer than others of similar size. It all depends. If you're really interested, and not just trying to guess how old I am, here is a pretty good summary.

My conversion algorithm is proprietary, based on an imaginary giant breed with a mature weight in the neighborhood of 150 pounds. Among other inherited tendencies, the breed is prone to skeletal problems due to its bizarre tendency to walk on its hind legs. Which is to say, I just made it up. Truly, I don't feel a day over 435.

Aside from the birthday thing I wouldn't usually give my age that much thought, had I not picked up a webcam to use to try out a hands-free mouse. Those things are brutal! (The webcam, I mean, not the hands-free mouse. The mouse is kind of remarkable, about which more another time.) Seriously, I have never been under the impression that I look like Charlize Theron and I'm totally OK with that, but one of the advantages of rarely confronting oneself in the mirror was being able to imagine that I was aging gracefully, you know, along the lines of a Jessica Tandy or Jane Goodall. According to my new webcam, this is not the case.

But for 443, I look pretty darn good.

Two Dog Night

It's starting to get cold here at night. Cold for Seattle, that is. It's not the same as Michigan-cold, of course, but cold enough for narrow dogs that don't carry much adipose tissue or fur for insulation. Although we provide them with dog beds, they prefer to sleep in a pile with the rest of their pack. On our bed.

Or more accurately, in our bed. They bring their wet fur and gritty little feet and cold pointy noses in from outside and hover expectantly until Scarecrow lifts the covers, letting in a rush of cold air, and they burrow to the foot of the bed, jostling for the best spot, between the humans. It can be very bracing.

If Scarecrow doesn't lift the covers, either because he's asleep or because he doesn't want the bed to be infested with cold wet whippets, one of them will insert a pointy little nose under the edge of the blankets and, in an attempt to get under the covers without assistance, will bulldoze them into a pile at the bottom of the bed with its head and possibly its shoulders under the pile. Alternatively, one of them will tromp around on top of the bed until the covers are in a small heap, and will then lay down on the heap.

Best to let them in. They warm up before too long.

After a while, the mattress starts to vibrate. They're panting. It's only a matter of time before one of them stands up and jumps off the bed, taking the covers with them.

I've read speculation that one of the benefits that canine domestication offered to both species was that sleeping together would conserve heat.

I'm not buying it.

On an unrelated note, I had another birthday yesterday. It kind of snuck up on me. You lose track, once you get to my age. That would be... let me think... 443. In dog years. But I really don't feel a day over 435.

All in My Head, Part Two

After another week using the head array control to steer my power chair, I think it's working pretty well, considering.

It's not as convenient or as easy to use as a joystick, if you can use a joystick. I can tell you from personal experience, though, that it's a whole lot better than trying to use a joystick if you can't use a joystick.

For the most part I've still been keeping to a speed that can be best described as 'glacial', although I prefer to think of it as 'stately.' Or perhaps 'dignified.' Getting down hallways and through doors at home and at the warehouse where I spend my days is enough of a navigational challenge for the time being.

Turns out one of the hardest things to do is go in a straight line. My chair (Permobile C300) doesn't track worth a darn anyway. With the lateral switches on the head array being either on or off, it's hard to straighten out just a little bit. Being front wheel drive, the chair has a tendency to fishtail when going downhill. I don't remember noticing it that much with a joystick, but it's really hard to control with the head array.

We've been dinking with the position of the headrest and the lateral switches. Really small adjustments can make a huge difference in how easy this thing is to use. If the side pads are in close, it's easier to turn the chair but harder to go straight. The best position for the head rest really depends on how you're sitting in the chair, which changes during the course of the day.

To respond to the comments on my last post (which I do appreciate very much even if I hardly ever respond to them directly because I'm a lazy slime weasel), using this thing does require a fair amount of head control, but not that much range of motion.

I don't need Scarecrow's help to change the speed profile. Although I can't press the buttons on the display, I've got a separate switch I can use as a kind of mode selector. That gets me to the settings menus, where I can select a different speed profile, or change the tilt, recline, etc. Navigating the settings menus and selecting options entails a series of taps on the side and back pads of the array, which is kind of awkward but not complicated. Sure beats having to ask somebody to do it for me.

Yes, I'm still learning (the hard way) that leaning my head against the head rest when the chair is on can send it crashing into walls or furniture. The dogs? Well, they're whippets. If they can't stay out of the way of a chair set to 'glacial', there's no hope for them.

I haven't taken it out in the real world much, yet. Excursions to the UW Medical Center and the optometrist went OK. I'm feeling like I'm safe enough to give it a try, but the weather has been crummy. This being Seattle, it should stop raining sometime next July.

OK, so. Mobility problems under control, for the moment. Thanks to TinMan, Cupholder v.3 is working great. My next quest is to find a hands-free way to control the cursor on my computer.

It'll be fun!

It's All in My Head

I've been using the head array control to drive my wheelchair for a couple of weeks now, and I know you're just dying to hear how it's working.

No?

OK. Most people will never need to know this. Even people with MS will probably never need to know this. I sure as heck didn't figure that I ever would. But in the unlikely event that you should go looking for information about using a head array -- what the equipment looks like, and how you use it to steer a power chair -- I can tell you from experience that there isn't much of anything out there. Besides, Herrad at Access Denied was curious about how it works and how it looks. So, here:

 

This is the head array control installed on my power chair. There is a switch installed in each of the three sections of the headrest. Touching the headrest lightly activates the switch in that section. All the rest is software.

The way my chair is currently set up, touching the center section of the headrest makes the chair go forward. Touching a side section makes the chair pivot that direction. Touching the center and a side section simultaneously makes the chair veer to that side. 

Unlike a joystick, where the distance and direction you move the stick controls where you go and how fast, each of these switches is either on or off. To change speed, reverse direction, or control other chair functions (tilt, recline, etc.), you select options from menus on a control unit.

If you could see this better, you could see that it displays battery status and whether the chair is moving or on standby (duh). It also shows which speed profile is selected, and whether the chair is going forward or backward. Each of the five speed profiles is preset to accelerate, travel, turn, and decelerate at a selected speed. To change speed, you go back to the menu and choose a different profile. The profiles are configurable, but the wheelchair tech is probably the only one who has the software to do it.

This is just one example of a head array control set up. There are head arrays with more switches, fewer switches, or different kinds of switches. Newer control units are a lot cooler, but my three-year-old chair is too old to be compatible with them. The software is pretty much totally customizable.

So what's it like to use?

It takes some getting used to. You'd expect that it takes practice to direct the chair where you want to go, and that's true. It does. And you might expect that your neck gets sore, because you're using it in unaccustomed ways. That's true too. You might even expect that you need to make sure the power is off before you rest your head on the head rest. Unfortunately, I keep forgetting to do this. And it's surprising how often you need to look at the display to see if you're going to go forward or backward. And it's surprising how often I forget to do this, too. It's not nearly as convenient or intuitive as a joystick. It seems like I'm always having to stop and dink around with a menu to change a setting.

Still, I have better control with the head array now than I have had for a long time using a joystick. Although it took forever and cost a lot, I've caught up with the Red Queen again. For a while.

Remember remember

Remember remember the fifth of November
Gunpowder, treason and plot...

Maybe it's just me, but being burned in effigy every year since 1605 seems a little excessive after the man was tortured, and then sentenced to being hanged, drawn, and quartered. Even if plotting to blow up Parliament was a really bad idea.

I don't suppose it's any creepier than Halloween. Any excuse for a holiday, I guess.

Happy Guy Fawkes day?

All Hallows Eve

Halloween. All Hallows Eve. Samhain.

We never get any trick-or-treaters. In the five years we've been in this house, not a one. I don't understand it.

We always got a few brave souls at our old house; kids who knew there was a house at the end of that long, dark, scary driveway, even if you couldn't see it from the street.

When we moved here, I figured we'd attract a swarm of little ghosties in ghoulies. OK, the driveway is kind of steep, but it's not very long, and from the street you can see there are two houses once you get up here. And we're not out in the middle of nowhere. It's a normal suburban neighborhood, one that I would once have considered a reasonably target-rich environment. We don't go crazy with Halloween decorations, I admit, but we did put out a jack-o'-lantern for the first year or two. We quit when it didn't seem to make any difference.

This year, it will be different. This year, we will be visited by every trick-or-treater in western Washington state. This year, they will come.

This year, we didn't buy any candy.

On a Halloween-ish note, Scarecrow passed along a video clip of some clogging mummies. It's too good not to share:



Every time I watch it, I find myself thinking there are couple of steps I could steal. Even though that train left the station long ago, I can't seem to help it. I do the same thing when I listen to somebody play banjo. "Oooh, that's cool! I could do that!"

I can't, of course. I probably couldn't then, truth be told. I never was much of a musician. But I played when I could. I danced when I could. That's going to have to be good enough.

That's good enough.

15 in 15

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

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

OK, here we go...

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

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

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

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

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

Murder in Kenmore

I live in Kenmore, a suburb of Seattle at the north end of Lake Washington. About 6:30 the other evening I was sitting in the car while Scarecrow went in to Safeway to pick up a prescription. I was just sitting, not thinking about anything much, when after a while I noticed that crows had been flying overhead for kind of a long time. As I watched, they continued to fly overhead. Sometimes I could see 10 crows, sometimes maybe 50, sometimes only one or two, but for as long as I sat there I could see crows flying northward over the parking lot to their evening roost. I'd say I was there for about 15 minutes. When we left to drive home, they were still flying overhead.

That's a lot of crows. A murder of crows.

Their winter roost is a mile or so from our house. Every evening this time of year American crows (Corvus brachyrhynchos) congregate in this area in large numbers. Really large numbers. Tens of thousands. John Marzluff, a guy at UW who studies them, says the local crow population began to expand during '70s and since then has "increased 30-fold."

"It wasn't really a comeback," he says, "it was an invasion."

Crows are not your rare, exotic, or retiring bird. Even I can watch them. You don't have to creep up on them, stealthily, in inaccessible places, using a long-range spotting scope, at the crack of dawn, hoping to catch a fleeting glimpse. If you want to watch crows, toss a couple of Cheetos out there and you'll have more of them than you can keep track of. (Marzluff used Cheetos as bait when he was netting birds for his study. He says they're like crack to crows.)

Nothing bashful about crows. They are raucous and noisy and disputatious. They're smart and social and amazingly adaptable. They can figure out a way to live pretty much anywhere.

I really like them.

I admit, though, that watching them, I can't tell one from another. They have the advantage of me in that regard.


Is That a Caveman or Dick Cheney? Crows Know the Difference

The "D" in DME

So, about the head array control on my power chair. Because I know you were dying to hear.

The initial speed and acceleration settings were way too energetic for negotiating tight spaces. Or even for negotiating pretty roomy but not entirely wide-open spaces. This is a switch control, remember. It's either on or it's off. Go or don't. I've spent the last couple of days trying really hard not to ram into things. With only moderate success.

The chair I used when I was trying to decide if I wanted to install the head array was much easier to control, so I knew it was possible. On Monday I called Mike the Wheelchair Guy about adjusting the settings. This morning he came and did it. I now have a Granny Gear for getting in and out of the van, or creeping down the hall and turning through the door to the bathroom. Without damage to walls or woodwork. Much better.

The new control uses a micro-switch to turn on, toggle between forward/back, select the speed range, and control seat functions.  The switch emits a rather loud chirp whenever I tap it. That's obtrusive but tolerable, since hitting the switch inadvertently and turning the chair on without realizing it would be bad. If I press the switch and hold it, I can turn the chair off. This causes the switch to scream loudly for 5 seconds.

Five seconds is a lot longer than you'd think, when you're making a really irritating noise and there's no way to shut it off.

I asked Mike the Wheelchair Guy if there was a way to make this stop. He said he didn't think so, but he'd check with the manufacturer. Still, if it turns out to be the worst thing about this new setup, I'm OK with that.

In the course of crashing about over the last few days, I managed to get my new drink holder hung up on the edge of the door when I was getting out of the van. Scarecrow got me loose, but in doing so broke the cupholder. (In situations like this, Scarecrow is not likely to take a tentative approach. As my dad is fond of saying, "Don't force it. Get a bigger hammer.") This made us both very sad.

Scarecrow told TinMan what had happened, admitting that he had subjected the cupholder to serious abuse. TinMan allowed as how that might be the case, but maintained that the D in DME ought to stand for Durable.

He is at work on cupholder v.3.

DME-Day

Having finally decided to get a head array control installed on my power chair, and given Mike the Wheelchair Guy the go-ahead to get the parts, I was starting to think it had been kind of a long time since I'd heard anything. (I'm bad like that. I take forever to decide what I want, but once I make up my mind, I want it yesterday!) I even put a note on my calendar to call and pester them. Then, on Wednesday, they called to say they had the stuff and wanted to see if Mike could take my chair off to the shop for a while on Thursday, that would be yesterday, to install everything.

You bet, I says.

So that's what happened. He picked up my chair, took it away for a couple of hours, and brought it back with a head array control. I was too tired yesterday afternoon to mess with it much, beyond noticing that I need a speed that's slower than Slow. Unlike the proportional speed control you get with a joystick, the switches in the head array are either on or off. To get moving, the chair starts off with a surge of speed that's a little faster than it's set to go. Even at the slowest speed setting, that's a little too exciting for negotiating tight spaces. Easy fix, but I'll need to get Mike to do it. They don't let me mess with the software, which is probably just as well.

Thus far, I'd say that I do not love it. Navigating menus to control various functions is something I have to think about. I still need to use a couple of micro switches, and can't figure out where to put them. The steering on this buggy is pretty darned touchy. But I can see that all these things will get better with tweaking and practice. And it sure beats having Scarecrow drag me around.

And then there's the Patient Lift. Mike brought that yesterday, too. Yeah, I know we need it. We've been all over that. If something happened to Scarecrow, I couldn't go to the bathroom until he was better. I get it. But it's huge. Huge. When we remodeled the house to make it accessible, we neglected to add a wing for storage of durable medical equipment. There's the power chair. And the charger. And the shower chair. And the passenger seat from the van that we took out so I don't have to sit in the back. When you're not using it, all this stuff has to go someplace. And now this ginormous patient lift. Which is really big. Did I mention that?

Maybe we can leave it in the middle of the living room, and string it up with twinkly lights.

Inspiration-Free Zone

"No man but a blockhead ever wrote, except for money."

-- Samuel Johnson

I'm starting to accumulate partially-written posts that I set aside for one reason or another. Sometimes I didn't know what I wanted to say. Sometimes I knew what I wanted to say, but decided it wasn't interesting enough to write about. This being a typically self-indulgent blog, I don't give a moment's consideration to whether it would be interesting to read, but I need to find the writing at least mildly entertaining. Sometimes I'd be chugging away on something and I'd think, 'Nah. This is starting to feel like work.' And I'd stop. Hey. I can do that.

When I had a regular day job, waiting for inspiration to strike wasn't an option. If I felt inspired (not very likely, considering the subject matter), I would write. If I didn't feel inspired, I would write anyway. That's what writers do.

I don't think I ever would've said I love to write. My situation was better summarized by a quote I took from Linda Ellerbee, which she attributed to her grandmother:

"If you don't read, you can't write, and if you can't write, you must work for a living."

For me, writing always beat working for a living.

I'm not a writer anymore. I'm a retired person. I don't need to write. If I feel like writing, I do. If I'm not inspired, I don't have to. I'm accumulating partially-finished blog posts, but that's OK. I may come back and finish some of them. Others may never see the light of an LCD display, and that's OK too.

While I'm nattering on about inspiration, I should make it clear that I'm talking only about being on the receiving end, myself. If you're looking to be uplifted and inspired, keep looking. This is not the place for you. I'm not good at it. Plenty of bloggers strive to be inspirational, and do it much better than I. If you need inspiration, try one of them.

While I'm writing about what I don't write about, I could add that I don't blog about MS symptoms, either, unless I have them, or MS treatments, unless I'm taking them. There are plenty of websites that do a much better job of that than I would.

At this point, I could go back and try to figure out what I was writing about. But that would start to feel like work.

Bareit's Busy Day

Jasmine is not really all that fond of squeaky toys. Nylabones are OK. Dental chewies are nice. Scarecrow's knitting bag, however, is irresistible.

This is what we found when we came home the other day:

Bareit was obviously involved in this escapade. He likes to take his toys outside. Through the dining room...

 

Into the kitchen...

 

Through the kitchen to the utility room...

 

Through the utility room...

Out the (narrow) dog door...

Around the corner...

And out into the yard.

Note to whippets: if you want Scarecrow to finish your new sweaters before the weather gets cold, you'll want to stop doing this, even if he forgets to put his knitting bag were you can't reach it. Assuming there is such a place.

Where Did I Go Wrong?

Tuffy started her junior year at UW today. She's an English major.

Nothing wrong with being an English major. Some of my best friends were English majors. I just never expected my daughter would be one.

Looking back, I guess I should've seen it coming. She has always been a relentlessly verbal child. She had rules of grammar, even for made-up words. Instead of 'forget', for example, she used to say 'getfor.' But if it happened in the past, she would say 'gotfor.' Perhaps I should've realized it was a bad sign for a toddler to conjugate made-up verbs.

Instead, I was encouraged when she referred to a pair of objects as 'two ones.' I thought it reflected a sound understanding of basic mathematical concepts. And she always did fine in math and science -- at least as well as I ever did.

So where did I go wrong?

We always spent family vacations outdoors; camping, hiking, birdwatching. We bred and showed dogs, and more recently worked with retired racing greyhounds. How could she not grow up to be a little naturalist? A mini-me?

I held out hope last quarter when she took a comparative psychology class from David Barash. Animal behavior is fascinating, and if Barash teaches anywhere near as well as he writes, it should be a great class. How could she not be sucked in?

She liked the class. She did fine. She's still an English major.

It's not the prospect of dire job prospects that concerns me. A zoology degree doesn't buy you much, either. I spent the majority of my working life as a tech writer. She'll find something to do. That's not the problem.

It's just that whole nature-nurture thing. The idea that a child is a blank slate.

Nope. No blank slate here. Some behavior must be hard-wired. My daughter is an English major.

It could be worse, I suppose. She could be majoring in psychology. Or philosophy. Or she could be dealing drugs. Or voting Republican.

I'll deal.

Last Chance

For the past week or so it seems like I've been inundated by e-mail inviting me to donate now and help end MS. Well, that would be cool, wouldn't it? Right now, they say, we are closer to ending MS than ever before! (The exclamation mark is theirs.) They couldn't say that if it weren't true, could they? The missive I got this morning says if I donate by midnight tonight I will help accelerate their efforts to end MS forever. Imagine that. I'd better hurry. Wouldn't want to miss the midnight deadline; maybe they stop accepting donations.

Psssh.

I don't mean to rag on the National Multiple Sclerosis Society. They do a lot of good stuff, and I've taken advantage of their services on several occasions over the years. I realize that if they want to accomplish anything, they have to raise money. I know that. Services cost money. Research costs big money. They obviously don't know that MS already costs me plenty. How could they? How could they know that every nickel I spend on this stupid disease feels like money down a rat hole? And that apparently bottomless rat hole, my friends, has taken a lot of my nickels.

Although it totally hacks me off, I can almost ignore the tone of their communications. Some marketing/PR person probably spent a long time on the wording of those solicitations. They were probably reviewed and scrutinized and tested on focus groups. They can't help it if I don't belong to their target audience. I never liked writing that stuff, I was never any good at it, and I really don't like reading it. It sets off my manipulation detectors. Exclamation marks make me suspicious.

I'm waiting for the point of this post to become apparent, and starting to think it's not gonna happen. I don't know why this makes me so cranky. It just does.

The MS Society wants me to donate?

Nah. I don't think so. I spend enough on MS already.

Raindrops Keep Fallin' on My Head

As weird MS symptoms go, I was thinking this one had to take the cake. It almost felt like... a drop of water on my face. But it's the middle of the night, and I'm lying in bed. How crazy is that? Maybe I dreamed it.

In the morning, there was a smallish puddle of water on the windowsill above my head. OK, so I didn't imagine it. And it had rained that night. But it wasn't windy, and even if it had been, the window is under a broad eave. The outside of the window -- a brand-new window, by the way -- was dry. There's no water anywhere else. Why was there water on the windowsill?

The next night it rained again, and yes, we did indeed have a leak in the roof. It was dripping right through our brand-new sheetrock ceiling, onto the head of the bed. Scarecrow set out buckets to catch the worst of the drips, and moved the bed away from the drainage. We went back to sleep as best we could, listening to water plink into buckets.

In the morning he went up in the attic to find our roof perforated by a tree branch about 18 inches long, maybe 2 inches in diameter. Yeah, that would do it.

Now we remember that some weeks earlier we had been sitting around the house one afternoon when we heard/felt a huge WHUMP!!, like maybe a large tree branch landed on the roof. This happens from time to time. We have a row of black cottonwoods along one side of our house, and they drop stuff. The trade-off for this known risk to the roof is that they provide very effective and inexpensive air-conditioning during those rare spells of hot Seattle summer weather. You pays your money and you takes your chances.

When Scarecrow checked it out he didn't see anything on the roof, but there was a really really really big branch in the front yard. Maybe it just clipped a corner, made a lot of noise but didn't do any damage? We figured we'd dodged a bullet. A limb that size could have caused some serious grief.

Turns out we did dodge a bullet -- a limb that size would've taken out our roof -- but we weren't entirely unscathed. The thing that actually made the noise was a much smaller branch that punched a hole right through the roof, into the attic, where you couldn't really see it from the outside. You wouldn't notice until it started to rain.

Scarecrow cobbled together a patch, and one of the guys who worked on our house during our remodeling project came by and patched his patch. It must've worked. This was a couple of weeks ago, and it hasn't rained since.

The Last Day of Summer

The sun's not up yet when the alarm goes off in the morning, and the leaves are starting to turn. The days really get shorter fast, this time of year. I'm resigned to fall.

I can celebrate winter -- even if it's gloomy, the days are getting longer. I can celebrate spring -- the trees leaf out, and everything goes green. I can celebrate summer -- the days start early and go late, and they're occasionally even sunny. But fall -- I'm resigned to fall.

Even in Michigan, where the crisp fall days were a welcome relief from the hot muggy summer, and the sugar maples in September looked like they had batteries, I couldn't help but anticipate the cold, dark days coming up. Once the leaves were down, fall was gray, gloomy, and seemed like it went on for a really long time.

Around here, the fall foliage is not nearly as colorful. The deciduous trees let go of their leaves without much fanfare. Scarecrow and Tuffy shovel them into limp, sodden piles that nobody would be much tempted to jump into.

Today is the last day of summer. I'm looking at blue sky outside my window. Fall doesn't start until tomorrow.

Use Your Words

For toddlers, using newly-acquired language skills is really hard. Preschool teachers are always reminding kids to "Use your words", instead of using a right roundhouse to express their feelings more directly. Even my relentlessly verbal daughter would sometimes resort to "point and grunt", and, when her rudimentary vocabulary proved frustratingly inadequate, was occasionally reduced to smacking a schoolmate upside the head. (Some things never change. Eighteen years later Tuffy is still relentlessly verbal, and still smacks people upside the head. At least now she does it at the gym.)

On one occasion a teacher broke up a physical altercation between two little boys, telling them to use their words. One of the combatants marched up to the other, got right in his face, and shouted, "WORDS!!!"

My dad tells a story about a long-ago conversation between his older brother and a high school counselor. My uncle did well in science and math, but saw no point in studying English. When the counselor pointed out that mastery of grammar and spelling would make my uncle better able to express himself, my uncle replied, "I ain't never had no trouble expressin' myself." I'm not sure the story is really relevant, but I've always liked it. My uncle was a real jerk.

I've always thought I had a reasonable facility with words. Now that I find myself having to use words and nothing else, I'm learning that it's a lot harder than you'd think.

For example.

One of our regular weekend tasks is clearing off the detritus that accumulates on top of the desk in the office. It's something I used to do myself, because Scarecrow doesn't much care where stuff winds up. Now that I can't shuffle or file papers myself, I need Scarecrow to open envelopes, extract contents, sort stuff into piles to be paid, or filed, or otherwise dealt with, and file the papers that we need to keep. It sounds easy enough. The physical part of manipulating paper isn't something you have to think about. Until you have to do it using your words.

To keep things simple, let's assume I can actually think of the words I want to use, which is not always the case. The routine goes something like this:

"Can I see that? No, the other one... the one on the left. On the left. Put it on my keyboard, so I can see it. The first page. The one on the top. Closer. Not that close. OK, can I see the next page? No, the backside... turn the page over. You can recycle the rest of the stuff. Where did that come from? No, not that... keep the statement, the first two pages. Put it in the pile to be paid. The second pile. Second from the left. Stack it so I can see the balance and the due date. OK, that was easy. Next?"

The only reason it goes as easily as it does is that Scarecrow has developed an uncanny ability to read my mind. If I had to do this chore with anybody else, it would be a lot harder.

Situations that take a whole lot of words to do something really easy come up all the time. You have no idea. They say a picture is worth 1000 words, but I tell you what: when all you've got is the thousand words, just being able to do the point part of "point and grunt" would save me about 10 zillion words a day. And I'm not exaggerating.

Sometimes I just want to whap somebody upside the head.

Weenie Whippet

The other morning I was lying in bed, trying to pretend it wasn't morning yet. Scarecrow, having fed the dogs and started the coffee, had progressed to the bathroom phase of his morning routine.

Suddenly, from the other end of the house I heard a prolonged, agonized SCREEEEAMM!! followed by chesty, I Am a Very Big Dog!!-sounding barking.

WTF?

Scarecrow obviously didn't hear it, couldn't hear me, and there wasn't a darn thing I could do about it besides imagine a rat... or a squirrel... no, an opossum... no, maybe a raccoon! coming through the dog door. I have a very active imagination, but none of the things I was imagining would be good. Scarecrow was still in the bathroom.

Presently, everything was quiet. Jasmine trotted down the hall and jumped on the bed. No sign of copious blood loss. I know Bareit was in his crate, so unless our local vermin are very determined and exceptionally talented, he was OK.

WTF?

I never realized how long Scarecrow spends in the bathroom in the morning.

Anyway, when he finally came out, I told him what I had heard and suggested he might want to go down and check it out.

He found a mouse in the kitchen sink. Munched.

Apparently Jaz encountered the mouse in the course of her usual morning inspection of the kitchen counter. The mouse, being outweighed some 300 to 1, got the worst of it, but didn't go down without a fight. I'm pretty sure it wasn't the mouse I heard screaming. It was our weenie whippet.

So far, the effectiveness of various mouse eradication systems we have implemented stack up as follows:

• kitchen trash can     4 (that I know of)
• mousetrap              1
• whippet                 1

If we were to award a score for drama, however, the whippet would definitely win. it's a good thing she's cute.

Doc Ock

It might not be quite as cool as this, but it's pretty close.

TinMan (Scarecrow's senior sibling) was pretty sure he could design and build a better hands-free cupholder than the one I had. I needed something that would attach to my chair or a table, and hold a drink where I could get to it without needing to use my hands. To my surprise, there weren't a lot of commercially available devices that would do this. The closest thing I could find was a bright yellow plastic baby bottle holder that worked, kind of, but broke the first week I had it.

TinMan was all over this. Scarecrow sent him photos and measurements of my chair, and the two of them had lengthy discussions about various design and material options. He contacted the chair manufacturer (Permobile) for dimensions of possible attachment sites. He put his son, who was home from summer session for a one-week summer break, to work building it. (Sorry, Tin Jr. This was not my idea!)

It arrived Thursday, and I've got to say it's pretty cool. There are brackets to attach it to either side of my chair so it reaches around over my shoulder, and it's quick to install or remove. It can also attach to a plate that slides under the seat cushion. The gooseneck is flexible (duh), swings out of the way, and is attached to a telescoping rod for height adjustment. The cup holder part snaps onto the end of the gooseneck. Designed for use on a boat, it's self-leveling, so tilting my chair back doesn't dump the contents of the cup in my face. It's no uglier than the rest of my power chair, in fact, it kind of blends in. And it's sturdy. It may just be a cupholder, but this puts the durable in durable medical equipment.

Although in my past-tense day job I've been through lots of software development cycles, this is my first experience with hardware development so I don't know if you'd call this a prototype, or an alpha, or a beta, or what. Anyway, I expect software and hardware development are similar in that having the first example be perfect in every way would:

1. be a miracle, and
2. take all the fun out of it

So, yeah. I'm having to take back what I said about engineers being impervious to user feedback. TinMan and Scarecrow have already been modifying the attachment bracket, so installation and removal will be quicker. The gooseneck needs to be able to support more weight without sagging (hence the tasteful and stylish lightweight plastic cup in the photo, a relic of the days when Tuffy, who is now 20, could order from the kids' menu in a restaurant). The self-leveling cupholder is a brilliant idea, but it turns out, in practice, that you want more control over the position and angle of the cup than this allows. I expect this batch of fixes is only the first of many rounds of tweaks and adjustments.

But you know, for now, I can drink (from a lightweight cup) without pestering anybody for help. Scarecrow doesn't have to keep handing me my drink at meals. And the utilitarian design, far from detracting from its appeal, makes me feel like Doc Ock. How cool is that?

TinMan said he could build a better cupholder than the one I had. And he was right.

Enablers Needed

The wheelchair guy has figured out what bits I need to install a head array control on my power chair, and my insurance company has graciously granted the regal okey-dokey. My coinsurance is 20%, and they'll let me pay half now, and half at installation. So we're good, right?

So, yeah. There's that 20%, and 20% of the lift, and 20% of the lung vac... But here's the thing. 20% of a big number can still be a pretty big number. Especially if there are dollar signs attached.

And what is it going to get me? For now, I would be able to drive my monster robo-chair more-or-less safely, and adjust the seat without help. I would be able to get out of the house, without leaving a trail of devastation and chaos in my wake. At least, not all the time. That would be cool. But for how long? We would be throwing a significant chunk of change at a solution for a progressive disease. Another run with the Red Queen. If I knew I would be able to use it for a year, say, it would be easier to commit. For six months? Maybe. For only a month or two of enhanced mobility, it probably wouldn't be worth it. And, of course, there's no way to know.

it's not like I can't think of other things to do with that money besides pouring it down the MS rathole. Assuming that MS always has first priority when allocating family resources just seems wrong to me.

But it would be cool to walk through the park across the street with Scarecrow and the dogs. It would be very cool.

Balancing Act

Balancing my checkbook is a job I find myself saving for a time when I need to feel like I have control over something. When I can't do anything about anything else, I can balance my checkbook. I can be totally obsessive about chasing down that three cent discrepancy. I can make the numbers line up. This is something I can do.

On my retirement income this is not a task for the faint of heart, mind. Like watching a train wreck, it can really get my heart racing. When I still had my day job, I could be reasonably confident that the balance, when I got to the bottom of the page, would be positive. Now it's somewhat more exciting. The number at the bottom of the page is another thing I can't entirely control, but whatever its value, I can sure as heck make sure the bank thinks it's the same as I do.

I need to balance my checkbook.

Forever Young

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

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

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

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

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

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

I still don't.