A mostly true account of life with a guy, a recently-ex-teenager currently living and working in Korea, a couple of narrow dogs, retirement from a job as a tech writer, a recently-acquired obsession with stalking dead people, and MS.
"May your coming year be filled with magic and dreams and good madness. I hope you read some fine books and kiss someone who thinks you're wonderful, and don't forget to make some art – write or draw or build or sing or live as only you can. And I hope, somewhere in the next year, you surprise yourself."
– Neil Gaiman
I hope all my blogger buddies are looking forward to a fine year. I know I am.
I suppose there are people who would say they wouldn't want to live the way I do. There might even have been a time when I would've said the same thing myself. But here I am, looking forward to another year.
I guess I think about it the same way I used to think about playing music in public. Since I was never very good at it, I tried to assuage my performance guilt by thinking that even if most people in the audience wished I would go back to playing in my basement, there was probably someone out there thinking, "God, I wish I could do that!"
There are people better off than I am, but there are also people who face challenges greater than mine. The year I just had was better than no year at all. Way better.
I'm looking forward to some good madness and fine books. I'm looking forward to books that challenge me, and some that don't. I don't know about making art, but I might finally finish that post about Harry Spevak on Out on a Limb. It could happen.
Seems like everybody feels the need to make lists this time of year. The 10 Best ___ in 2012. The 25 Worst ___ in 2012. The 100 Most ___ in 2012. And of course those nasty lists of New Year's resolutions.
A couple of weeks ago, Huffington Post ran a piece called "The F**kit List". This promising title sucked me into one of those self-help, feel-better-about-yourself kind of articles that I never read, just on general principle, but it got me thinking.
What if I kept a list of things I do, or might once have done, or felt I should have done, but have come to suspect are no longer worth the effort? Some are probably things I never should've started doing in the first place. I won't miss doing them, and nobody will notice if I don't. Those are easy. But what about things I used to like to do, and I thought were worthwhile, that now take more effort than they used to? In some cases, much more effort. In other cases, I can no longer do them at all, but still wish I could, or still feel like I should. Which of those should I continue to struggle with, and which should be relegated to my F**kit List?
The first item on my F**kit List: Christmas cards.
Even though I don't celebrate Christmas, the end-of-the-year celebration used to be a really big deal around here. Even before Tuffy was born, there was sewing, shopping, baking, digging out the boxes of decorations and lights and putting them up inside and out; it was a really big deal. I used to like to send cards, lots of cards, made them by hand, included a personal, hand-written note with each one, the whole 9 yards. Crazy.
As it got harder and harder to do, I couldn't bring myself to just scribble a signature on a store-bought card and print out an address label from my meticulously maintained database. I wouldn't include a generic "holiday letter". I wouldn't send out fewer cards. No, apparently if I couldn't do it right, I wouldn't do it at all.
I don't remember when I last mailed out real physical Christmas cards in envelopes with stamps. It's been long enough that the only ones I get are from my insurance guy and the dentist, whose secretary adds a personal, hand-written note wondering why it's been so long since I've been in for an appointment.
I regret losing touch with the people I only heard from once a year. In some cases they're people I like a lot, but our paths no longer cross on a regular basis. Even if it's only the sketchiest outline, even if it's just knowing they're still living in the same place, I miss hearing what they've been up to the previous year. I liked letting them know that I'd been thinking about them. But you know what? I could no longer do it, and I'm tired of feeling bad about it. So it goes on the F**kit List.
So, to all my blogger buddies: Whatever you celebrate this time of year, celebrate the heck out of it. Although I rarely leave comments on your blogs, it's usually because I can't think of anything useful to say, not because I don't care how things are going with you.
Scarecrow just took the screens off the windows in our office at home. It's still not warm enough to have them open, and you can see out a lot better without screens on. Duh.
The view isn't particularly spectacular. Close-up, there are the trunks of a couple of large but scraggly black cottonwoods. Since the house sits up above the street, the window looks across the street to Swamp Creek Park. As the name suggests, it's not a lawn-and-rose-bushes kind of park (although there is a patch of grass with some picnic tables further in). From here, I'm mostly looking across the street into the canopies of assorted deciduous trees, which are just beginning to think about leafing out, and a couple of red cedars. There's some seriously ugly fencing that doesn't even do a particularly good job of keeping the dogs in, not that anything seems to do a particularly good job of keeping the dogs in, but the window mostly looks across the top of it and birds sometimes stop there to check out the neighborhood.
We do get some good birds. Nothing exotic, not that I would recognize anything exotic, but close-up views of birds that like tree trunks. Downy woodpeckers, brown creepers. The occasional pileated woodpecker. Robins and juncos and towhees and Steller's jays and chickadees and Bewick's wrens and golden crowned kinglets and similar Little Brown Birds. And crows. And squirrels. I can see the weather outside, and tell whether it's day or night.
When last I worked at a real job in a real office, the 'windows' in my office looked out on a hallway. I called it the Burrow. For half the year, it was dark when I went in and dark when I came out. I never knew whether the sun ever came up or not. I felt like a gopher. Still, there were people and meetings and things to do and background noise and a coffee pot in the kitchen. There were pictures on the wall, and a whiteboard, and my greyhound calendar, and a bookcase, and geological layers of assorted desk detritus.
The bunker is different. It opens off of a dark interior hallway, way the heck at the other end of the warehouse from most of the office activity. One wall is cocoa brown, just a little darker than the walls of our office at home. The other three walls are that institutional not-quite-yellow color. There is nothing on any of the walls except dings and gouges, which I did not put there but which I'm sure my chair will make more of. In this big empty room, there's a little table against one wall, with my laptop on it.
Was it something I said, do you think?
Seriously. It's quiet. That's good. I can put up my greyhound calendar. I'm connected to the 'net, so I've got books and tunes and movies and blogger buddies and whatever else. Scarecrow's got a job, and I've got a place to be while he's there. This is all really good. Really good.
But I gotta tell ya, it sure makes me appreciate my window.
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…
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.
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.
There have been times in my life when I knew that pursuing a particular course of action would invite ridicule, and test my capacity to endure public humiliation. Sometimes I did it anyway. If I wanted it bad enough.
An example that comes painfully to mind was competing in obedience trials with a Gordon setter. Although Gordons are lovely dogs, people looking for an obedience prospect don't typically choose one, for good reason. It's not that they're stupid. They've just been bred to have, how shall we say?, an independent turn of mind. In consequence, commands are likely to be perceived as suggestions. Instant and unquestioning obedience will never be at the top of their list of priorities. That's just the way they are. I knew that.
On top of this, the individual at the center of this story was a born clown. She was never happier than when she was the center of attention. She loved to make people laugh. You can imagine where this is going, and that's pretty much the way it went. Her interpretation of commands issued when she had the show ring all to herself were amazingly creative and, I admit, pretty darned funny, although it took me a while to appreciate the humor. She collected a devoted gallery of spectators who could be counted on to show up at ringside to see what she would come up with this time. She eventually earned an obedience title, even ranking among the top 10 Gordons in obedience in the nation that year, although it might only have been the top seven or eight, since I'm not sure there were 10 Gordons competing in obedience that year because most people know better than to try this. In the pursuit of this goal, I learned that my capacity for public humiliation is greater than I ever imagined. Gotta want it.
I don't remember when I last could pick up a cup and drink out of it like a normal person. It was that long ago. I'm almost getting used to drinking everything with a straw. Coffee, hot as well as iced. Wine. Beer. Scotch. But a straw only solves part of the problem. A drink with a straw is still no use to me unless it's sitting on a table where I can reach it by bending over (a maneuver of which I suspect Emily Post would never approve), or there's somebody to hold it for me. What I wanted was a way to drink wherever I happened to be, without having to pester anybody for help. Preferably without creating a spectacle, although I can do spectacle, if need be.
I didn't expect it to be that hard. I am not, after all, the first quadriplegic on the planet. I wasn't surprised that the bountiful array of cupholders available for walkers or wheelchairs generally assume the user can extract the cup from the holder and convey it to the user's mouth. Most people can, but that's not what I need. We could rig something with a mic stand and boom, but I was hoping to find something a little more portable. I eventually located only two commercially-available devices that would attach to my chair or a table and hold a drink where I could get to it. Only one looked like it might work for me.
This particular example of assistive technology was intended to clamp onto a stroller or crib and hold a baby bottle, hence the Fisher-Price color scheme. So much for being inconspicuous. There was no choice of color. The plastic clamp is about as sturdy as it appears in the picture, which is to say, not very. It can support maybe 12 ounces of liquid in a lightweight cup. My 16-oz double-wall stainless steel insulated coffee cup with a full load of coffee is definitely not happenin'. It's huge and bright yellow and looks like, well, like a baby bottle holder. But it works. Scarecrow can load it up and go about his business, and I can drink whenever I want. I had forgotten how cool that was. If it makes my ginormous black Robo-monster power chair look even more ridiculous than it did before, Ch. MacTyke's Heartbreaker CD showed me I can deal with worse than that. Way worse than that.
In Patrick's immortal words, "Freedom is always fashionable." You've just gotta want it.
As a young and impressionable child I remember reading a story in which the main character (Pollyanna?) visited a neighbor with a gift of calf's foot jelly. I remember not knowing what calf's foot jelly might be, but thinking it sounded disgusting. It never occurred to me that I might one day be in a position to be the recipient of such a gift.
Last weekend an old friend and her daughter came by the house for a visit. I think I first met this woman when we were in kindergarten, long ago and far away. We sat next to each other in Mr. Vincent's class in sixth grade. We reconnected last year because of a high school reunion neither of us attended, when we discovered we have lived about 10 miles apart for the past 13 years or so. I've really enjoyed getting reacquainted. Her life and experience has been very different from mine, but we're still interested in a lot of the same things. She's exactly the person I would've expected the girl I once knew to grow up to be. I would've liked her even if we weren't already friends. Her daughter is a kick. We had a beautiful sunny afternoon to sit out on the back deck and catch up.
Which left me thinking about calf's foot jelly. After they left, I finally looked it up. According to Gourmet Britain ("your guide to the best of British gourmet food"), Calf's / Calves Foot Jelly is "a jelly made by making a stock that includes a calf's foot. This naturally sets when cold, and from Norman to Victorian times used to be popular as nourishment for invalids. The Normans considered it as a treat in normal life, flavouring it with pepper and saffron, or perhaps red wine, then decorating it with laurel leaves - then serving it at banquets." They add that "The calf's feet will probably have to be ordered."
I don't feel like an invalid. I'm hardly ever sick (if I could apply my knuckles to my wooden skull, I would be doing it now). Still, it seems like a visit with me must be like making a charitable visit to a sick neighbor, or a frail, elderly relative. Our visitors come in, we sit down, and we talk. If Scarecrow's not busy painting the new siding on the house we might remember to offer something to drink, or brownies if I managed to wheedle Tuffy into making some. That's pretty much it. We don't go any place or do anything. We just talk. I'm sure I find this way more entertaining than somebody who actually has life.
Still, if someone is willing to do this for me, I'm grateful. I try not to pounce on them and talk them to death, although I admit I'm still working on that. it's wonderful to talk to a real live person.
As long as they don't bring calf's foot jelly. I still think it sounds disgusting.
When the weather gets like this, it's probably just as well I no longer have a day job, as I wouldn't be getting anything done. Blue sky, sunshine, warm(ish). Flowering plums. I love flowering plums -- they look like cotton candy trees. Crocuses. Forsythia. Azaleas. Pink! Yellow! Purple! When the first flowering plants are in bloom against a background of evergreens and the sun comes out of the clouds, this place is spectacular.
Spring fever.
Even if spring isn't officially here for another two and a half weeks, it's starting to look like spring to me. As ailments go, spring fever is one I'm glad to have. I might only get it for part of the day; a weather phenomenon Seattleites colloquially call a "sun break". I get it every year, but this is the first year I don't feel guilty about coming down with it because there's nothing else I really should be doing.
I could use a serious case of spring fever right about now. My arms and hands have been even more useless than usual lately. I tried to sign some papers the other day, and found that even the ridiculous scribble I've been using for a signature is beyond me now. We need to arrange for some backup/respite care, so Scarecrow and I aren't joined at the hip 24/7. Despite the lateral support in the back rest of my power chair, it's getting harder and harder to sit up straight. I can't control the chair with the joystick anymore, so I don't go anywhere. And it's getting hard to take a deep breath. Stuff I don't want to think about, and chores I don't want to do.
I don't know if spring fever is on anybody's list of treatments for MS, but it ought to be.
Those annoying highly-effective people tell us to arrange our schedule so we take on our most demanding tasks at the time of day when we're most capable. That always sounded like a good idea to me. There are tasks that require focus and attention, and those I can do on autopilot. Of course, when I had a day job, I often wound up spending my most effective time of day sitting in a meeting, or working on a task I could do on autopilot, its priority inappropriately elevated by an imminent deadline. Still, ordering my to-do list by the time of day I could most effectively accomplish a particular task always sounded like a really good idea, even if I never actually managed to do it.
These days, the time of day determines not so much whether I can do a task well, but whether I can manage it at all. You'd think I'd get it by now. Things I can do easily (relatively speaking) mid-morning will be difficult or impossible in the late afternoon. If I put something off to later in the day, even if I really really really mean to get to it, it ain't gonna happen.
In the middle of the morning, most days, the pharmaceutical soup that determines my outlook and energy level predictably has me feeling as cheerful and positive as I'm likely to get. My physical function is as good as it's likely to be all day. Living in the moment doesn't seem so bad. Late afternoon of the same day can be a very bad place. I'm probably stiff and surly and everything is way too hard and I'm f&%king tired of this sh!t. This is not a moment in which I want to spend a whole lot of time, thankyouverymuch.
At a good time of the morning on a good day, when I'm full of energy and purpose and everything seems relatively easy, I still put off tasks to the afternoon even though I know, rationally, that when the time comes, I probably won't be able to do them. I just can't seem to not do that.
The closest I can come to adapting to the drastic difference in what I can do between the good part and bad part of the day is to consciously set my status by the best part of the best time of day. I need to take note of a moment during the day when life is good and I can do stuff and I'm glad to be alive. I need to be able to go back to that moment during the part of the day when things can look very dark and it can be hard to remember that life is good and I'm glad to be alive.
This all sounds embarrassingly new-agey, not to mention whiny and self indulgent, and I'm not sure what my point was, if I had one. And Dragon Naturally Speaking just crashed. Twice. So I guess I'm done.
Well, I guess that went about as well as could be expected.
I talked to my mom and dad on the phone this morning. In addition to the usual status updates, I meant to have a chat about their transportation problems. After years of being able to go wherever they want whenever they want, mom can't drive, and dad shouldn't. Their public transportation options are very limited. They find this frustrating. Infuriating, even. I understand that, I really do. But they can't go taking it out on my brother and his kids, who are only trying to help. The plan was to talk about all that.
I wouldn't say the conversation was a total failure. I got an opening when my dad mentioned his visit to the ophthalmologist. Apparently his vision is not appreciably worse than it was at his previous visit, which is not saying a great deal. Apparently the ophthalmologist feels dad's vision is borderline for driving, although the DMV seems to think he can see just fine. Dad told me he only drives around home, he doesn't drive at night, he doesn't drive in the rain (not reassuring -- this is Southern California, it's a desert), he only goes "over the hill" to shop at Costco (a trip of 15 miles each way over a windy canyon road). If I was waiting for the opportune moment, this was it.
"Dad," I say, "I'm with my brother and the kids on this one. I really think you need to stop driving."
He didn't get mad. This is good, we're still talking. He didn't tell me I'm an idiot, which is usually what he tells my brother. We talked about how he hates to impose on family and neighbors for rides, but acknowledged that sometimes letting people help you is a good thing for both of you. We talked about his trip to the doctor yesterday, taking dial-a-ride on the way in and the bus on the way home. It was a nice day, the trip went mostly as planned, and cost $.35. We talked about using the power scooter he bought for my mother to get to and from the bus stop, and about taking the scooter on the bus. He hadn't thought of that, and sounded intrigued by the possibility. The upshot of the conversation was that he said, in the nicest possible way, something like "I know what you think. Thanks for your concern." All in all, I am not feeling like I accomplished a great deal.
My conversation with my mother was even less helpful. When I brought up her problems getting around, she said she'd let me talk to dad about that. When I said it sounded like it was a real problem for her, she said she'd let me talk to dad about it. OK fine. I know this whole situation really makes you mad. But Ma, you've got to stop taking it out on my brother and the kids. They're just trying to help.
"How is Tuffy doing in school this quarter?"
A Chat with Your Mother. I couldn't find a clip of Peter and Lou Berryman, or Cathy Fink and Marcie Marxer, but this rendition is interesting in its own way.
A Chat With Your Mother
(Lou & Peter Berryman)
There are pirates in their fetid galleons
Daggers in their skivvies
With infected tattooed fingers
On a blunderbuss or two
Signs of scurvy in their eyes
And only mermaids on their minds
It's from them I would expect to hear
The F-word, not from you
We sit down to have a chat
It's F-word this and F-word that
I can't control how you young people
Talk to one another
But I don't wanna hear you use
That F-word with your mother
And the lumberjacks from Kodiak
Vacationing in Anchorage
Enchanted with their pine tar soup
And Caribou shampoo
With seven weeks of back pay
In their aromatic woolens
It's from them I would expect to hear
The F-word, not from you
There's the militant survivalists
With Gucci bandoleros
Taking tacky khaki walkie talkies
To the rendezvous
Trading all the latest armor
Piercing ammo information
It's from them I would expect to hear
The F-word, not from you
There are jocks who think that God himself
Is drooling in the bleachers
In a cold November downpour
With a bellyful of brew
Whose entire grasp of heaven
Has a lot to do with football
It's from them I would expect to hear
The F-word, not from you
There's unsavory musicians
With their filthy pinko lyrics
Who destroy the social fabric
And enjoy it when they do
With their groupies and addictions
And poor broken-hearted parents
It's from them I would expect to hear
The F-word, not from you
When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.
So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.
My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.
I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.
Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.
Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.
The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.
There are questions you shouldn't ask unless you're really sure you want to hear the answer. You know the kind I mean:
"How much worse can it be?"
"What else can go wrong?"
"Could this be any more confusing?"
Really. You don't want to know.
As I struggle to keep my power chair from plowing through our newly sheetrocked and painted wall, there are questions I'm tempted to ask my neurologist when next we meet.
What will I still be able to do this time next year?
What will I be capable of next month? Next week?
What is going to happen to me?
That's right up there with, "Do these pants make my butt look big?"
I won't ask, of course. My neurologist is very knowledgeable, but these are questions for which I know she has no answers. And even if she did, I'm pretty sure I wouldn't want to hear them.
"There is no time but the present."
-- Terry Pratchett
-- A Thief of Time
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."
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.
Ernie went to the vet today to have an owie removed. Just a benign tumor on his hip, but general anesthesia is always a little scary for greyhounds, and he is 11 1/2 years old. This is definitely not what the poor old guy had in mind when we asked if he wanted to go for a ride in the car.
The vet called a little while ago to say the surgery went fine, no surprises, he can go home later this afternoon. All good news. The vets at the clinic where we take our dogs are amazingly wonderful -- I wish I had a people doctor I liked as well.
After Ernie's previous sojourn at the clinic (he broke his tail and had to have it amputated) I was talking to one of the vets about pain meds, and a dog's perception of pain. Dogs can be incredibly stoic. (We are not talking about Ernie, here. Ernie is a total weenie. Scream first, ask questions later; that's our boy. But some dogs can be incredibly stoic.) A dog's perception of pain now isn't complicated by how it's going to feel tomorrow, how long it's going to last, or whether it's going to get worse.
As coping strategies go, that's not bad. Just deal with what you gotta deal with today. One day at a time. Take care of what's in front of you, right now. Worry about tomorrow, tomorrow. If I can do something to make things better, or to change the way things are likely to turn out, fine, do that. If the best laid plans, etc. etc., and I need a power chair, help feeding myself, or going to the toilet, or turning over in bed, or any of the other indignities this disease can dish out, just take it as it comes. One thing at a time. I never in a million years expected to wind up in the situation I'm in today, but I must be able to cope, because I'm doing it. Besides, what's the alternative?
I can scare the living wahootsis out of myself by thinking about what MS might have waiting for me down the road. They say you shouldn't ask a question unless you're real sure you want to know the answer. I don't ask how much worse it can get, because I do not want to know. We're living a dog's life, me and Ernie. Ernie's a little better at it, because he's had more practice. One thing at a time. One day at a time.
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