Busted!

I wasn't trying to keep this blog secret, exactly. I mean, it's a blog, fer Chrissake. This is the Internet. How secret can it be?

Yet, in some respects, blogging feels very private. I guess I self-censor more than I would in a private journal, but when I'm writing a blog post I don't really think about anybody reading it. It's very odd, since for so many years in my day job the first thing I had to decide was who I was writing for. Now I guess I'm writing for me, although I don't know why I would want to do that. I put things in this blog that I wouldn't want people who know me to know. But since this is a blog, and this is the Internet, people I don't even know might read it. Somehow, that's OK.

I was a little disconcerted, the other day, to find Scarecrow reading this blog. I never told him about it, though I didn't make any particular attempt to hide it, either. It's not that I didn't want him to read it. There's nothing in it he doesn't already know, nothing I wouldn't want him to know (I went back and checked), and I didn't say anything bad about him (I checked that, too). I just didn't think he'd find anything of interest. I guess I was hoping to spare him having to listen to some of this stuff in person. It's OK. It just feels a little weird. Now, when I'm writing a blog post, I'm aware that someone might read it. Weird.

While I'm vaguely on the subject of family news, Tuffy came home from the gym a few days ago with a hematoma auris, more commonly known as cauliflower ear. Eewk. When she was wrestling in junior high and high school she always wore ear guards, but apparently for mixed martial arts it's not the done thing. So she had it drained, and she has to wear a very awkward pressure bandage around her head for the next nine days in the hope the perichondrium will reestablish a connection with the underlying cartilage. And it hurts.

I have not asked whether she plans to wear ear guards from here on out, because sure enough, if I do, she won't. Her birthday was last month, but they don't stop being teenagers on the day they turn 20.

Can't Do It Alone

The power went out at our house yesterday afternoon. It was only about 4:30, but this time of year it gets dark early. Tuffy lit some candles. No 'net. Too dark to read a real book, and all my e-books had considerately returned themselves to the library.

I sat in the dark, listening to music. It's been a while since I did that. I pretty much stopped listening to music when I got to where I could no longer play it, but that's stupid. Too many choices, but I come back to a few favorites, over and over. Chris Smither is always good. Just as I got through the playlist, the power came back on.

Turn off the lights and listen to this.

Chris Smither
Help Me Now




I've been a fool of singular cool, all by myself
Nobody showed me how, I was born that way
Every day is a solo played on a single string
Nobody shows up, and nobody walks away

What do I do when the tune is through
How'm I gonna get me home
What would you say if I turned your way
And said "Help me now, I can't do it alone.
Won't you help me now, I can't do it alone."

Because lonesome is as lonesome does, and I do it
Perfect practice keeps me next to me
Nobody needs to need me, there's nothing to it
Friends you don't make always let you be

Where do I go to close this show
This one-man-band-to-the-bone
Why does it feel like such a deal
To say "Help me now, I can't do it alone.
Won't you help me now, I can't do it alone."

Well there's a bitter taste to this wicked waste of emotion
In the time it took just to dig myself this hole
Finding peace of mind in this commotion
Terrifies my solitary soul

Tell me how to see outside of me
Tell me what I should have known
Start at the top and don't stop
Till I can say "Help me now, I can't do it alone."
Won't you help me now, I can't do it alone."

Our Weekend Project

Last weekend, Scarecrow and Tuffy finally emptied out the self-storage space we've been renting during the remodel-that-wouldn't-die, and moved everything that was in it back into the house. That's one more expense we won't have every month, and I'm ecstatic about that.

Of course, since we've managed to get along without this stuff for almost a year, you've got to wonder how bad we really need it. And if we don't really need it, wouldn't it have made more sense to get rid of it before we paid to store it for a year? Yeah, well, OK, next time for sure.

In order to clear out the storage shed, we took a perfectly usable, newly remodeled office and turned it into an indoor garage.
This is not actually a picture of the mess we've made of the new office. It's actually an unretouched picture of my dad's garage. In fact, it's an unretouched picture of part of my dad's garage, although the whole thing looks pretty much like this. As does our office. (I would like to believe the disease that causes this condition has no heritable component, but I fear it does.)

Our project for this weekend is to start going through all this stuff and either put it away, or throw it away. If there's no place to put it, it's out of here. This time, I really mean it. We need to at least start with a place that doesn't look like a landfill.

Fortunately or not, we have enough experience with our slovenly habits to realize that the office, once it's in use, won't look whole lot better than it does now. Even the threat of an avalanche of papers and books roaring out of the office and engulfing the rest of the house probably won't motivate us to become tidy people. And on our disability budget, the only cleaning that will get done will be the cleaning we do ourselves.

Good thing we've got doors.

Looking For Adventure

Many years ago, when I was young and out of my mind, I loaded my stuff in the back of my truck and moved from Portland, Oregon to Michigan to begin a two-year fellowship in a place I'd never been with a boss I'd never met. By the time I got there I didn't have enough money to turn around and go back, so if the Michigan winters got the better of me or one of my coworkers turned out to be a sociopath, I was stuck.

It felt like quite the daring adventure. True, I had my truck, and roads, and maps to get me there. Lansing was hardly uncharted wilderness. There was housing, central heat, grocery stores. Life there would not be all that different from what I left behind.

I can't help but compare that to the story of Adrienne Duvivier.

The daughter of Antoine Duvivier and Catherine Journe, Adrienne was born in Corbeny, in the Picardie region of France, in 1626. When she was 20, she married Augustin Hebert dit Jolicoeur, a young man recently returned to France from Canada. After the birth of their first child, a daughter, in Paris the following year, the family sailed from La Rochelle to New France and settled in the colony that would one day become Montréal.


In 1647, aside from a group of nuns working to establish a hospital, Adrienne was one of the few white women in the colony. Augustin worked as a fur-trader, merchant, farmer and master-mason. He died in 1653, leaving Adrienne, with three small children, one of the village's largest landowners.

In 1654 Adrienne married Robert Lecavelier, a gunsmith from Normandie, with whom she had four more children. The family was among the 627 residents of the colony in the census of 1666. Adrienne died on 20 October 1706 at the age of eighty.

Is that a life, or what?

One of Adrienne's sons, Leger Hébert, married Marguerite Gamelin. They had 13 children, at least seven of whom survived childhood. Leger's direct line continues to this day. To this person, in fact. To my daughter.

I am not under the impression that this puts as in a particularly exclusive company or makes us special in any way. What with the prevalence of early marriages and large families, most of French Canada and much of the rest of the world can trace their ancestry back to one of the prolific early residents of Québec. I'm just fascinated by people who would leave everything they knew for an unsettled place with brutal winters and an indigenous population that had, at best, mixed feelings about their coming. Most of the people who came couldn't afford to turn around and go back home if things didn't work out. Some had to work just to pay off their passage.

Now that's a daring adventure.

I'm not a serious genealogist. I'm not even a not-serious genealogist. I started out tracing my family because, well, I can. I can't play music or dance or quilt anymore, or do many of the other things I used to do, so I was looking around for something new. When we get bored, bad things happen. This one branch of my mother's family is easy to follow, because the Catholic church in Québec kept voluminous records, many of which are available online. That's how it started. When I got back to the people who came to Québec when there wasn't anything there, I got sucked into the lives these people must have led. 

My daughter says I'm obsessed. If I start to tell her about any of this stuff, she rolls her eyes and asks if this is going to be another history lesson. Scarecrow listens, I think, because it keeps me busy and out of his hair. If either of them catches me not paying attention when they're talking to me, they accuse me of being off in the 17th century. Which is probably where I was. I've been spending a lot of time there lately.

It must've been an amazing adventure.

Burger Butt

Four months ago, Ernie spent a day at the vet having an owie removed; a benign tumor on the outside of his thigh. The surgery went fine and he seemed to feel a lot better with it gone, but it took forever to heal. Greyhound skin is so thin that it doesn't hold stitches very well, and they kept pulling out. So, anyway, it finally heals, more or less, leaving a big pink scar -- we call him "burger butt" -- and he's got another lump in the same area. He went back to the vet yesterday to get it removed.

Poor old guy. He'll be 12 next month. While that's not terribly old for a greyhound, it's getting up there. He can still manage a 3-mile walk around Green Lake, as long as he can sleep the rest of the afternoon, but his legs get shaky if he has to stand for any length of time, and he sometimes has trouble getting up on the slippery hardwood floor.

We usually adopt older dogs; seven or eight or nine year old dogs that are returned for one reason or another. When we adopted Ernie, he was not yet three. We've had him longer than any of the other retired racers we've lived with. We took him in as a foster, during the holidays, because all the usual foster homes were full. We actually maintained the fiction that he was a foster for a couple of days before conceding that he was staying with us for good. Even as a youngster he was always polite, reserved, gentlemanly. Not a kisser or a cuddler. If you needed a dog to make a fuss over you, he wasn't it. He was a cat-person's kind of dog. He still is, pretty much. He gets excited about a treat, or a walk, or ride in the car, in his reserved, Ernie-kind of way. You have to know him to see it.

We picked him up yesterday afternoon. The pre-surgery bloodwork looked good, and the surgery went fine. The vet says he's in pretty good shape, all things considered. He was pretty sore last night, but seems better this morning. He has a new, 5 inch incision right next to the old scar.

Old Burger Butt.

If MS Is A Gift, Where Do I Go To Return It?

My mom always told me I had a bad attitude.

When I was a kid I never understood what she meant by that, but now I not only see what she was saying, I'm starting to think she may have been right. Particularly around the holidays, so many people seemed to be recounting the blessings conferred by MS, or some other chronic condition. It makes them a better person, brings them closer to God, deepens their appreciation for life, family, whatever. I suspect I should find these essays inspirational and thought-provoking. I find them thought-provoking, all right. They provoke me to wonder, "Are you f%#king nuts?"

I do not see anything good about having MS. Nothing. I do not feel blessed in any way. I do not see it as an opportunity to become a better person. I'm perplexed by the general assumption that, when you have a chronic disease, it's important to maintain a positive attitude. Why is that? Can somebody point me to some real, convincing evidence that positive thinking makes a rat's patoot worth of difference, to anything?

I'm not talking about wallowing in self-pity, here, making yourself and everyone around you miserable. I don't see any point in that, either (although I admit I do it sometimes. I try not to wallow, but sometimes I put my feet in and swish them around a little). But isn't it positive enough to take one day at a time, enjoy what you can, appreciate the good stuff, and just slog through the rest?

Projecting a relentlessly positive attitude is hard work. I know. I do it all the time. Most people who ask me how I am don't really want to know, not really. "I'm fine..." I say, "I'm good...", and we talk about something else. I wonder if forcing yourself to be artificially positive might even have a negative effect. I find it very stressful to pretend I'm OK when I'm not.

Inspirational affirmations make me itch. "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain." "When life hands out lemons, squeeze out a smile."

"I have MS, MS does not have me."

I admit I'm being deliberately obtuse, here. I realize that the people who say this probably just mean they are determined to maintain a life outside of MS. They will not let the disease define who they are. That's all good. I try to do it myself. But every time I see this, what I hear is "If I fight hard enough, I can beat MS. I can keep it from changing my life."

Maybe you can. I hope you do. But I couldn't. MS has totally kicked my sorry butt. Maybe I should have fought harder. Maybe I wasn't positive enough.


I'm pretty sure MS has not made me a better person. When I finally had to retire from work, one of my coworkers told me, "You've been an inspiration to all of us as we see your courage and grace." It was such a nice thing to say, I only wish it were true. Have you ever noticed that obituaries always talk about fighting a brave battle against disease? I'm afraid mine will have to say I was a pitiful spectacle, a total cringing whining craven coward. I'm not being brave. If there were another option, I would take it. I'm just not aware of any.

I've even had people tell me "You're a survivor." I guess I am. We all are, aren't we? Until we aren't. Then we're dead. To borrow a headline from The Onion, "Despite Best Efforts of US Medical Profession, Death Rate Remains Obstinately High at 100%." Does being a survivor, when the only alternative is being dead, make me a better person? I'm not seeing it.

Maybe it's just my bad attitude.

-- Mme. Crabbypants

A Visit With The Rehab Guy

We met with the rehab guy the other day about new ways to drive my power chair. In our latest encounter with the Red Queen, I'm finding I no longer have the strength or range of motion in my hands and arms to use a fairly standard, garden-variety joystick to get where I want to go. The minor modifications we made six months ago now endanger entire city blocks, putting large numbers of innocent pedestrians at risk. It's kind of scary for all concerned.

Anyway, this guy (Let's call him Mike. Because that's his name.) is with a new durable medical equipment provider. This has got to be a good thing, because the company I've been dealing with up to now, the one from whom I purchased the chair originally and the only one in the area I was aware of, is incredibly horrible. Like, epic horrible. Amazingly, frustratingly, expensively, infuriatingly, I-don't-know-how-you-guys-stay-in-business horrible. Like, every interaction I've had with this company, and there have unfortunately been many over the past several years, has turned into a many-phone-call, multi-appointment comedy of errors. Even something that should be as straightforward as replacing the battery on my power chair. Really. If I had known there was anyone else within 50 miles, they'd have had my business before now. Anyway. The physical therapist says Mike is pretty good. Between her recommendation, and the fact that he could hardly be worse than my old provider, it was definitely worth a try.

We had expected to talk about two possible solutions:

• Some kind of modification to the size, shape, or position of the joystick control, which we expected to be more-or-less affordable but would, the way things are going, probably have us racing the Red Queen again in a few months
• A new control that I would operate with my chin or head, which I could probably use for longer but would probably cost more.
  

That's about what he told us, but instead of more-or-less affordable and expensive options, turns out they're both expensive options. Why am I not surprised. My insurance would pick up most of it, but even the co-pay would be a pretty good chunk of change.

We'll have to think about it. I know we'll have to switch to something else before too long. For now, we've come up with a homegrown jury-rig to my current joystick control that's working pretty well. For now, that will do.

I was feeling pretty good about having evaded, at least temporarily, durable medical equipment hell.

At lunch today, my footrest came off.

Sigh.

The Library Shelf

Reading books is hard work these days. Turning pages can be a real struggle; by the time I manage it, I've lost track of the story. Flipping back to the previous page just ain't going to happen, so I forge ahead, but I'm always afraid I'm missing something. Paperbacks can be particularly tricky to handle, and let's face it, everything is paperback these days. Books in electronic format are a lot easier to read for the dexterity-challenged, but not everything is available as an e-book yet.

Besides, I like real books. I like the cover art, the texture of the paper, the design of the typeface, the layout of the page, the feel of it in my hands (I can't really feel much anymore, but I have a good memory, and a good imagination). I like being able to mark my place with a bookmark from Munro's books in Victoria, BC, or Jocundry's in East Lansing, Michigan (is Jocundry's still there, I wonder?), and see how many pages I have left to read. Sometimes it's just worth it, even if I need help turning pages. Fortunately for me, Scarecrow is willing to put up with a lot. Since he had some time off work over the holidays and was just hanging around the house, I took advantage of his willingness to do this.

I wasn't reading anything edifying or high-minded. I read for fun. I admit I don't often give books the amount of thought they deserve; I read the way most people watch TV. My library shelf is entertaining rather than impressive. I just finished Wolf Hall by Hilary Mantel. Before that, Endangered Species by Nevada Barr, Pillars of the Earth by Ken Follett, Her Fearful Symmetry by Audrey Niffenegger, The Help by Kathryn Stockett, Roadside Crosses by Jeffery Deaver, Still Life by Louise Penny, not necessarily in that order. I'm currently reading New York by Edward Rutherfurd. I've got Push by Sapphire and An Illustrated Atlas of the Civil War waiting on the shelf when I'm done. And I bought Scarecrow a copy of Unseen Academicals by Terry Pratchett for solstice. When he's done with it, I'll drop everything else and read that next. I'm seriously due for a Terry Pratchett fix.

I'm still new enough to retirement that I feel vaguely guilty about spending all this time reading for fun; isn't there something else I should be doing? For the first time in my life, the answer is No.

In some respects, acknowledging that I have nothing better to do is painful. In other ways, it's something I might be able to get used to.

NPR Commentary

There was an interesting commentary on NPR this morning:

To One Of The Lucky Ones, The New Year Means More by Ben Mattlin.

It's not about MS, but it's an interesting perspective from someone living with a progressive neurological disability.