Sharing the Pain

Many of the websites I visit and the blogs I read are MS-related. Most of the time, I don't find them all that depressing. For one thing, a lot of the time they're not about MS. These people do have lives, after all. But even when they're writing about MS, reading them doesn't usually make me feel depressed. Yeah, having MS is crummy and I'm sorry that anyone has it. I wish I didn't have it myself, truth be told. I don't like reading that anyone's having a flareup or that their symptoms are getting worse. It might make me feel sad, but not depressed. The other day, however, I ran across a blog that I found profoundly depressing.

It's written by a 19-year-old girl who takes care of her mother. The mother has MS, and is apparently pretty seriously disabled. The girl is torn between loving her mother, and hating having to take care of her. It was not easy reading. It left me feeling really depressed.

You see, everything she has to do for her mother, Scarecrow has to do for me, and more. How could he not hate it?

Thinking about it, I realized I mostly avoid reading caregiver blogs. It's so hard for me to put myself in caregiver shoes, to imagine doing that job. I don't know how they do it. It's just too hard, and it never stops. It's easier for me to deal with having MS myself than it is to think about what it does to my family. I have no choice, after all. They could walk away, but they don't.

I've tried to avoid having Tuffy take on caregiver chores, to the point of hurting her feelings sometimes, I think. I don't want her to feel that she has to stay here and take care of me, instead of living her own life. It's a luxury we have because Scarecrow takes care of me instead. If it weren't for him, my daughter might be the angry young woman writing that blog. Hating herself, for hating her mother.

So, there's that. It took a serious dose of old-timey music, a couple of books with absolutely no edifying content, and some really stupid movies to restore my normal grumpy, cynical outlook on life. Sometimes it helps to share pain. Sometimes shared pain just makes more people hurt, and what's the point of that?

Tomorrow is Scarecrow's first day at Gloria's Books and Adult Day Care. The adventure begins…

There's an Outside, Outside!

I really need to get out more.

There are doors that go outside the house. I had almost forgotten.

It's been amazing. For the last three days in a row, the middle part of the day has been sunny and warm. And dry. Sunny and warm and dry enough to eat lunch outside. I had forgotten how much fun that was.

Scarecrow has been working on the deck, replacing some rotten boards. The month he had between jobs seemed like it would be a lot of time to work on household projects, but somehow there's less than a week left. How does that happen?

I'm bracing myself for when Scarecrow heads back to the salt mines, for all that I'm glad he's got a mine to go back to. It's not like I actually do any work when I go with him to work, but with the going and coming, it's a lot harder than staying home. So I'm enjoying these last few days of not-work. And if it's sunny and warm and dry enough to eat lunch outside, how cool is that?

Squirrel!

I sound the alarm!
Sneaky squirrel on our fence,
Come to kill us all!

EeerrrrwwrrowrrRRRrrwroooowrr...

It's quite a sound. I can't really describe it. The first time I heard it, I thought one of the dogs was in great physical distress; perhaps being disemboweled. Now I know that's not it. It's more like, "I need to be someplace and I'm going as fast as I can, but it's not fast enough."

EeerrrrwwrrowrrRRRrrwroooowrr...

A moment before, the ever-vigilant whippets might've been perched on the couch, ceaselessly scanning the horizon for intruders. From this vantage point, they can maintain surveillance through both the dining room and living room windows. Although these dogs typically have the attention span of a gnat on crack, they will carry out this visual patrol for hours at a stretch, on the alert for the least glimpse of a tiny paw, or nose, or the flash of a tail.

EeerrrrwwrrowrrRRRrrwroooowrr...

When one of them spots their quarry, or thinks they do, their legs are scrambling at maximum speed before they even touch the ground. It takes a moment before their flailing limbs gain purchase on the hardwood floor. Imagine Wile E. Coyote, taking off across the desert in a cloud of dust. It's like that. They're here, then they're both heading for the door at maximum whippet speed, which is really very fast. It's like watching a flock of birds, or a school of fish. How do they all turn at the same time like that, without running into each other? It's like two dogs with one brain. Pretty impressive in one way, but in another way, maybe not so much. I mean, two dogs, with half a brain each?

EeerrrrwwrrowrrRRRrrwroooowrr...

They drift sideways as they take the turn from the dining room into the kitchen, scrabbling for traction on the much-abused hardwood. Imagine the Doppler effect on their doggy siren as they negotiate the chicane through the kitchen and laundry room, and jostle for position as they approach the (narrow) dog door. Not being able to keep up with a whippet I never actually see this part of the pursuit, but Jasmine, being at a significant weight disadvantage, probably gets bumped out of the way. The slap of the door flap, and they take off across the deck.

Thunderthunderthunderthunderthunderthunder…

By the time the whippets race the length of the house, yowling the whole way, the squirrel is long gone. I haven't actually heard the squirrels snicker and chortle from their place safely beyond whippet reach, but I'm sure they do.

A couple of minutes later our tireless guardians trot back inside, hop back up on their perch, and the whole thing starts again.

And there's the male robin who, impelled by his annual case of testosterone poisoning, is determined to drive his reflection in our kitchen window away from the territory he has claimed. Every time the dogs hear him bonk against the window, they go streaking outside to keep us safe from robins. Since the robin starts bonking against the window as soon as it's light enough for him to see the evil interloper, the ever-vigilant whippets begin the day by tearing outside, taking the sheets and blankets from the bed with them.

Ah, spring.

*Apologies for the riff on Doggy haiku

Learning about Lightning

They say lightning never strikes twice in the same place. It makes sense, if you think about it. How much of a place is likely to be left, after it's been hit by lightning?

But me, I don't believe it anymore. Lightning can strike the same place twice. It may not happen very often, but it can happen. I know it can. Because it did.

On April 1, Scarecrow starts a new job that is absolutely amazingly like his old one. Who knew there were two book distributors in the Seattle area that would allow him to bring his disabled partner to work with him every day? It's way the heck the other end of town, so it will be the commute from hell, but how can you complain? Well, I can, of course. I can always complain. I'm really bad that way. But it beats the heck out of not having anything to complain about!

We still have some insurance problems to work out. Smaller problems than we were looking at before, for sure, but anything having to do with health insurance is always a pain in the butt. So there's that. But still.

Timing is everything, isn't it? Our old washing machine, which had been making an ominous clunking sound for some time, finally started smelling funny and filled the utility room with smoke. The new machine has many buttons, and can wash dog beds. Scarecrow likes.

Why Would You Want to Go Anywhere Else?

It looks like the snow last week is going to be the highlight, weather-wise, of the next couple of weeks. This is looking gloomy, even for Seattle, even for this time of year. Gloom, gloom, gloom.

It was Scarecrow's birthday yesterday. His first day of unemployment, which took some of the fun out of it, but still, having a birthday is better than not having one. And it's not like birthdays seem to have much of any effect on him. Although, as a 'nom de blog', Scarecrow is a pretty good fit on many levels, I could just as well have gone with Peter Pan:

I'll never grow up,
never grow up,
never grow uu – UP,
not me!

And the Yakima Fruit Market is open for the season. It always opens around Scarecrow's birthday. And since it's between our house and the vet clinic and the library, we go by there often. (The vet clinic and the library are close together, which is convenient.)

Scarecrow is going to talk to somebody about a job tomorrow afternoon, which means a couple of things:

1. He had to get a haircut. Well, he may not have had to, really. I think this is going to be pretty informal, but still, it's the done thing. I can't remember when he last cut his hair. Probably when he was refereeing wrestling, when Tuffy was in junior high (she's now a junior at UW). Anyway it was long enough ago that he had a waist-length ponytail. 'Had' being the operative word here.
2. This meeting is way the heck the other end of town – several towns, in fact. It will take a couple of hours, at least, what with getting there and back, and Tuffy has to work, so we're doing the home care thing again. It's the safest thing to do. I need to get used to the idea. It's not really that bad. Really. I know I'll get used to it. Eventually.
3. The meeting might lead to a job. And that would be good.

More Odds Than Ends

Blue sky and snow. We don't see too much of either of those things in Seattle, but last Wednesday we had both. Kind of unsettling.

When I don't feel like putting together a blog post, it's usually either because there hasn't been much going on, or a lot has been going on, and I haven't been able to sort it out. This time there has been lots going on, with the sorting definitely running way behind.

Most immediately, today is the last day for Bob's Books and Adult Day Care. Although the warehouse is looking pretty empty, there's still a lot of stuff to clear out. Scarecrow has worked here for almost 15 years, so not working here will definitely be a change, for him and for us. He's following up on a couple of job leads. If any of those turn into an offer, we'll see what we can do to make them work, day care-wise. In the meantime, we've got plenty of half-finished household projects to keep him busy.

A couple of people asked about the home-roasted coffee I mentioned in my last post. It was not roasted in our home, but in the home of one of the women who came to visit. Her husband has started buying green coffee beans in bulk, and roasting them himself. She says they bought a roaster, but that you can roast beans in the oven, or in a modified hot air corn popper. The end result, I've got to say, was pretty tasty.

I need to put some time in on the next issue of the Greyhound Pets, Inc. newsletter. Tell me again why I volunteered to write an article about intestinal parasites?

Scarecrow sent me this the other day:



Before you start in on me, I understand about disabilities that may not be apparent to the casual observer. I am not equating that with being lazy. Been there, done that, I get it. This is about people who really ought to know better than to park in a space reserved for people with a disability. Just a funny way to make the point, is all I'm sayin'.

That's about it. Lots of odd, not many ends.

A Very Ordinary Visit

A couple of people I used to work with came by the house for a visit yesterday. We caught up on jobs and kids and whatever else might've changed, or stayed the same, over the past couple of years. We drank home-roasted coffee, shared some bakery goodies, and yammered for a couple of hours.

The coolest thing about it – the very coolest thing about it – was how ordinary it seemed.

Yeah, I was sitting in my hideous black monster robo-chair, drinking the home-roasted coffee through a straw from a cup in my Doc Ock cupholder. And Scarecrow had to feed me the white chocolate brownie.

But we talked about how the places we used to work weren't the same as they were when we started there. We reviewed, at considerable length, the shortcomings of distressing coworkers. We talked about travel in Africa and South America. (They talked; I listened.) We talked about kids in, and out of, college. We talked about the future of tech writing, or the lack of same.

I don't mind talking about MS or disability or any of that. I wasn't particularly trying to avoid it. There wasn't that "elephant in the room" feeling. At least, I don't think there was. It just didn't come up.

It was really cool.

And the white chocolate brownie was so totally worth it.

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.