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.