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.
Thirty greyhounds, with their people and assorted hangers-on, welcomed spring with a walk around Green Lake in Seattle yesterday afternoon. Ernie would've loved it, but he was too sore and wobbly to go.
His visit to the vet this morning turned up about what we had expected. The new lumps on his leg are malignant (duh). There's no easy way to remove them, even if we were inclined to put him through that, which we're not. His joints are sore. His legs are weak. He screamed pretty much every place the vet poked him, but Ernie is kind of a weenie that way. The vet sent him home with some pain meds. We'll keep him comfortable. He'll let us know when he's had enough.
I'm OK with that. We'll enjoy being with him for as long as we can. When he's ready to go, we'll let him. It hurts that dogs don't live as long as we do, but they don't. Still, when you weigh the pain of losing them against the joy we get from their company, it's always worth it.
I admit I was looking forward to making the walk (roll) around Green Lake myself, even if Ernie couldn't. It wasn't his fault that I didn't go. I've been limping along (figuratively speaking) with bubble gum and bailing wire modifications to the joystick control for my power chair, but I'm afraid the Red Queen has caught up with me again. It's just too hard to make the chair go where I want it to, which, considering the size of this thing, could be really bad. I need a solution that doesn't depend on being able to use my hands. I need to talk to the wheelchair guy again. Maybe he'll have something the Red Queen hasn't heard about yet.
Scarecrow is having hardware issues. His office at Bob's Books is right above the room that houses the Adult Day Care Center, so I can hear the crashing and thumping and muffled, but discouraging, words. It might be a bad time to remind him that he needs to call the vet to make an appointment for Ernie.
There's no mistaking when Scarecrow's mad. He has a crashing, thumping, hollering, foot-stomping temper. It can be quite the spectacle, but it never lasts long and when it's over, it's over.
Me, I'm one for the slow burn. When I'm mad, I'm surly and quiet. I'm slow to forgive, and I never forget. Scarecrow's way is better, really. It's easier on everybody. But everybody in my family was a sulker. I never learned any other way.
Anyway, Ernie has two new lumps on his leg where we recently had the latest one removed. We knew they were likely to regrow, but these came up really fast. His leg didn't seem to hurt before, but now it obviously does. His hind legs are weak. He has slipped and fallen on the hardwood floor a couple of times recently, and has trouble getting up. He has even left a few kibbles in his bowl, which is not at all like our boy. We always said that if Ernie ever turned down food it was time to call the vet because he must have one foot in the grave and the other on a banana peel.
He is 12 years old, and I don't want to keep carving on him, but I don't want him to hurt. So we need to talk to the vet and see what we can do for him.
In the meantime, it's looking like a nice weekend and he still enjoys lying in the sun. As long as the dog bed isn't infested with whippets.
Um. About the bored thing. I've been messing around with my blog template. Let me know if I broke anything, OK? To borrow a phrase from every software developer I've ever known, 'It works on my machine.'
It never fails, seems like. With nothing on my schedule for months in either direction, two things I want to do happen at the same time.
I've been trying to get together with an ex-coworker for a while now, just to catch up, but since she lives way the heck at the opposite end of town, still has a day job, and has to juggle kids and parents and all, it takes some doing. So when we finally figured she could come up on Sunday afternoon, I was really looking forward to seeing her.
Then I remembered that this Sunday afternoon a bunch of the local greyhound folks were planning a walk around Green Lake. I was looking forward to that, too.
Decisions, decisions.
Not a big deal. We'll figure something out. It just seems like the chance of something like this happening ought to be less than 100%, don't you think?
Tuffy is on spring break as of yesterday. I see from her Facebook page that she's planning to spend it trying to find a summer job, applying for a scholarship I've been bugging her about, brushing up on her Chinese, and getting a head start on reading for next term. And I see my cousin reminding her to take some time to goof off and have fun, like she was going to forget. It seems odd to me that I frequently find out what's going on with Tuffy or Scarecrow from their Facebook pages, but there it is. Perhaps it's just my failure to keep pace with technology, but it seems weird to communicate by IM from one end of the house to the other, or even from across the room. We do it all the time, but it still seems weird.
I see from the gingersnap cookie Tuffy left for me in the cupboard that she stopped at Honeybear Bakery yesterday. Nice!
I just got an IM from Scarecrow saying he wants to knock off early and go home. Blue sky, sunshine... I'm out of here!
That's what my 89-year-old dad always says, when he passes a neighbor on his morning walk. Since he does not actually live in paradise, I guess what he means is it's a nice day and he's enjoying life.
It's pretty amazing, really. One morning, about two years ago, my mom found him on the floor. Exploratory surgery turned up three holes in his gut, and a section of necrotic bowel. They did an initial patch up, but nobody expected him to live. When he survived the first surgery they went back in for a more complete fix, and, to general amazement, he lived through that, too. He was on a respirator, on dialysis, in and out of intensive care (mostly in) for about a month. Nobody expected him to live.
Dad had been very clear about his end-of-life wishes. He did not want extraordinary measures taken to keep him alive. He did not want to live hooked up to a bunch of machines. He wouldn't want to live like that.
We had had that conversation, my parents, my brother, and I, sitting around their dining room table. It wasn't awkward or uncomfortable. He had the Advance Directive and all the necessary paperwork. He just laid it out. We all thought we understood exactly what he meant.
Turns out, when the time came, it wasn't that easy. For each treatment option there was a range of possible outcomes, and we had to try to guess which he would find acceptable, if he were able to decide, and which he would not. What if he lives, but he's confined to bed? What if he lives, but is left with a significant cognitive impairment? What if...?
As it happens, we got to have that conversation a second time -- kind of a 'before and after' thing. Dad's happy we made the decisions we did. He doesn't have much memory of the weeks he spent hooked up to machines in the ICU. He says he realizes he could've wound up severely impaired in one way or another, and says he wouldn't have held it against us had the decisions we made resulted in a less favorable outcome. I don't know if that's true, but that's what he says. He says if the situation arises again, which could happen, he's confident that we understand what he would want us to do.
If the situation arises again, I wish I thought it would be easier than it was the first time.
For myself, I don't want to wind up hooked up to a bunch of machines either. Beyond that, I don't know that I'd be able to draw a line in the sand. As a kid I remember reading about a woman who was paralyzed in a skiing accident, and thinking I'd never want to live in a wheelchair. More recently I remember thinking I can deal with not being able to walk, as long as I can use my hands. The point at which I'd say 'I wouldn't want to live like that' has shifted significantly over the past couple of years. What if I couldn't see? What if I couldn't speak? Would I say 'If I ever get to the point where , I wouldn't want to live like that'?
No lines in the sand for me, thanks. This may not be paradise, but it's another day in Seattle. And that's OK.
When the weather is like this, I try to think of the clouds as a soft, fluffy, gray blanket. That works pretty well through most of the winter, especially if you compare winter in Seattle to winter in Michigan.
Around this time of year, though, it starts to feel like a cold, wet, soggy gray blanket.
It even snowed for a few minutes, earlier today. What the heck?
It's looking like it will be a soft, fluffy, gray weekend. Fortunately, I've got a couple of books I've been meaning to read. I gave Scarecrow 'Unseen Academicals' by Terry Pratchett for winter solstice, and he finished it a while ago. I always try to give books I want to read to people who will loan them back to me when they're done. Am I clever, or what? Since Scarecrow and Tuffy are equally clever, we usually have a book trading round robin after every holiday. I've also got 'The Time Travelers Wife' by Audrey Niffenegger. I had it on hold at the library, but after three months I was all the way up to number 364 out of 493 on the hold list, and I got tired of waiting. I found a bargain paperback (I'm such a tightwad) and I was already paying shipping on Scarecrow's birthday present anyway, so what the heck. I get crazy like that sometimes. I don't think it's Scarecrow's kind of book, but Tuffy might like it.
I'm ready for soft, fluffy gray winter to turn into soft, fluffy gray spring. This is Seattle, after all.
'Didn't you say you'd left me some steamed cabbage?'
Tuffy gets home late on Wednesday nights, and prowls through the kitchen for leftovers.
'It's in the steamer,' Scarecrow told her.
'There's nothing in the steamer.'
This is not good. Our dogs get veggies from time to time, but a) they're not supposed to steal them off the counter, and b) whippets and cabbage are a lethal combination. You wouldn't think a small(ish) dog can make the air in an enclosed space totally unbreathable, but I tell you, they can. Greyhounds can be bad that way, too, but our creaky old greyhound's counter surfing days are over. It's still too cold to sleep with the bedroom windows open, but we really had no choice.
I really hate it when our house smells bad.
The guy who lived in our house before we bought it was a serious smoker. The carpets reeked. Even the tile in the bathroom smelled like stale smoke. After four years, you'd still occasionally get a whiff of stale cigarette smoke.
And of course, there are the dogs. Gastrointestinal issues aside, greyhounds and whippets are not particularly stinky, but still.
In the course of remodeling our house we ripped out all the carpeting, and threw out the area rugs that were in the living room and dining room. That helped, some. I'm really looking forward to being able to open the windows. What we really need is fresh air.
My mom is a major consumer of air fresheners, and I admit her house always smells nice. It just seems like using one smell to cover up another doesn't really address the problem, and besides, an early traumatic experience with air fresheners left me scarred for life.
Warning: if you're easily grossed out, you might want to skip this next bit.
I was a TA for a Marine Mammalogy class at UCLA back in the early 17th century. We collected specimens of dolphins and pinnipeds for dissection labs, but these were not the tidy specimens of fetal pigs or dogfish sharks that you get from a biological supply house packed in formalin. They were real specimens that died of who knows what, washed up on a beach somewhere, and sat there for who knows how long before winding up in a freezer at the County Museum of Natural History. By the time we got them and thawed them out, they smelled really bad. Really bad. People on the fourth floor of the Life Science building were complaining about the smell. The lab was in the basement. My office was right across the hall from the lab.
We set up a line of room air fresheners in front of fans in each corner of the room, not really because we thought it would help but because we had to do something. It didn't help. The scent of assorted air fresheners on top of decomposing marine mammal pretty much turned me off of them forever.
Maybe we'll just use some Murphy's Oil Soap on the hardwood floor, and wait until it's warm enough to open the windows.
Warning: This post discusses some of the gory details of progressive MS. If you avoid support groups because it's scary to see people in wheelchairs (and I think that's a perfectly reasonable thing to do, myself), you might want to skip it.
You always read about how people who are diagnosed with MS are afraid they'll wind up in a wheelchair. That's the symbol of disability, the point at which you go from being pretty much OK to being disabled. I realize it's a matter of perception, and everybody's different. But I've been unable to use my hands, and unable to use my legs. I've tried it both ways. For my money, not being able to walk is not all that big a deal. Not being able to use my hands is far more disabling.
Not that it's a contest or anything. They both suck. And, unfortunately, they're not mutually exclusive.
Not being able to use my legs means I can't stand or walk, of course. Can't ride a bike (that hurts), can't dance (that really hurts). Hiking and backpacking are out. That's about it. Everything else I wanted or needed to do, I could still do. Pretty much. It might not have been easy, or pretty, but I could do it.
Not being able to use my hands is a whole 'nother thing. Not being able to use my hands not only means I can't do things I used to enjoy, like quilting and calligraphy, or things I did to earn a living, like using a keyboard or a pencil and paper. Not being able to use my hands exposed heretofore unimagined vistas of humiliation; not being able to take a shower or brush my hair or dress or eat or blow my nose or use the toilet without help. If your hands and arms don't work, you're pretty much screwed.
I had trouble getting doctors or therapists to take nonfunctional hands seriously, but show up with a mobility problem and they were all over it. Maybe because the mobility problem was one they could solve.
There are lots of solutions for legs that don't work. There are canes and walkers and crutches and wheelchairs and ramps and curb cuts and elevators and large toilet stalls with grab bars. People can see that you're disabled and, if they're so inclined, make accommodations. If your hands and arms don't work, you just look inept and clumsy.
Having scribbled all this, I'm having second thoughts about putting it up. My point, supposing I had one, was to compare the relative disability occasioned by loss of function in various limbs. I just thought it was interesting, in a bizarre and twisted kind of way. It wasn't what I would have expected.
I don't mean to scare anybody. (You'll notice the warning at the beginning of the post.) I realize there are people who find it scary to think about the possible consequences of MS. Who wouldn't? Having a progressive neurological disease is scary, for real, but not everybody with MS will wind up where I am. Not everybody will get the opportunity to compare life with no hands to life with no legs.
I definitely don't want anybody to feel sorry for me. What would be the point of that? It doesn't help me, and would just make you feel bad. Don't do it. While I don't consider MS a gift and I'm not typically one to look for the silver lining in every cloud, I do realize that I'm lucky lucky lucky. As much as I would rather they didn't have to, I have an amazing family able and willing to take care of me. I have a place I can live, food on the table. Life is not what I expected it would be, for sure, but it's good. On the whole, all things considered, most days, it's good.
If you post to a blog in the forest and the trees don't comment...
It's all about comments, isn't it? This whole blogging thing?
At first I was fascinated by the hit counter. How many people? How long? How many pages? Where were they from? Who knew that you could land on my blog by entering "moping around with self-pity" in a search engine?
But really, it's all about comments. When I publish a post, I can't wait to hear what my blogger buddies (you know who you are) have to say. I value your opinions and treasure your support. I rarely leave comments in response to your comments because, well, because I'm a lazy slime weasel, but I appreciate them, every one. I do.
I don't often leave comments on my regular round of blogs, probably because I'm a lazy slime weasel. But know that there are times when I open the comment box only to stare at it, feeling there's nothing I could write that could possibly help you or ease your pain. So I don't write anything. I'm much more likely to write "LOL" or "yeah, me too." That emotional support stuff is hard, and I'm lazy. It doesn't seem like writing "I read what you wrote. I hear you" could mean anything, but I know it does. I know I appreciate it when people do that for me. For the times I should've said that but didn't, I'm sorry.
Another runaway blog. I don't know that I had anything particular in mind to write, but I'm pretty sure this is not at all what I intended. So, yeah.
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.
Bareit the whippet joined our pack a year ago last Sunday.
This is how the boys marked the occasion. They get crazy like that sometimes.
Whippets are not like greyhounds. I realize I'm working with a sample size of one, here, but they're just not. It's not just the size difference. We've had small female greyhounds that were not much larger than a large male whippet. It's not just the energy level, although admittedly, other than Ernie, all of our greyhounds have been old age pensioners when they came to live with us. It's more a different perception of reality. Faced with an obstacle a greyhound will, quite sensibly, go around. It would never occur to a whippet to do this. A whippet will go over the obstacle, at great speed, clearing it with feet to spare, without thinking about who might be asleep on the other side. A greyhound could easily do the same thing. They just don't.
A greyhound will happily sit or lay on the same part of the couch a human does, usually taking his half out of the middle. A whippet will sit on the arm of the couch with its forefeet on the seat, or stand on the back, or drape itself in unusual ways over an available human (as illustrated above). Our first experience with this was when we first got Bareit. This was his solution to the problem of one laptop, one lap dog, and one lap:
Their reality is very three dimensional.
When faced with something new, a greyhound, like most sentient organisms, will take its measure from a safe distance. A whippet will walk up and poke it with his nose. If it turns around and makes a scary noise, the whippet will run away really fast. Which it is, fortunately, well equipped to do. Were that not the case, few whippets would survive to reproductive age.
I realize that you can't really generalize from one year with one whippet to all of whippet-kind, but if I were to do that, I'd say I like whippets very much. They're not like greyhounds, but I like them both.
Yesterday was Scarecrow's birthday. I got him a trash can for the bathroom, and a DVD of a movie (Sweet Land) he's already seen. Hey, it's what he wanted!
Lately I keep catching myself dozing off during the day. No, wait, I don't catch myself dozing off; I catch myself waking up after I obviously dozed off, head nodding, jaw sagging, oh, sorry, was I snoring? It's bad enough when I'm by myself, just sitting with my laptop in the afternoon. It's mortifying when I'm with Scarecrow and Tuffy in the evening, reading a book or watching a movie. The other evening we were watching a Dr. Who DVD, the final episode of the season, and I woke up at the very end with no idea what happened. Audio books are a disaster. At least with a regular book, if you fall asleep, you can pick up at the page where you left off. If you fall asleep when you're listening to an audio book, it just keeps right on going and figuring out where you were when you fell asleep is a real pain.
It's such a stereotypically old lady thing to do. I remember being impatient with my grandmother, or my dad, or my mom, when they'd fall asleep watching TV. Scarecrow's dad would fall asleep in the middle of a conversation, practically.
Digression: Scarecrow's dad used to teach at a junior college. When he had an evening class, it was his habit to curl up underneath his desk for a nap in the afternoon. Seriously. Scarecrow's dad could take a nap anywhere. Anyway, on one occasion, an instructor with whom he shared the office was meeting with a prospective student and his parents. As they discussed the merits of the program, they heard an assortment of waking-up noises and Scarecrow's dad emerged from underneath the desk. I love that story. End of digression.
I was such a little snot. There is painful poetic justice in finding myself doing the same thing that once provoked my scorn and ridicule.
It could be an MS thing. Lately I've been really stiff. Any movement entails serious isometrics. It's hard work, and it makes me tired. Maybe it's that. Or maybe it's just getting old. Either way, I don't like it. So, should I try to do something about it? If so, what?
Really, other than the old lady stereotype, what's the harm in falling asleep during the day? It's not like there's anything I particularly need to get done. Why do I need to stay awake, anyway? Mostly, during the day, I'm just trying to find ways to entertain myself. If I'm tired, maybe I should just sleep. That much less time to try and fill. Choosing this option seems kind of nutty, but I'm not sure I know why.
OK, if I don't want to doze off in my chair, what are my options?
The obvious thing to try would be to get more sleep, or better sleep, at night. My schedule here is pretty much tied to Scarecrow's since he has to dump me into bed at night, turn me over from time to time, and haul me out in the morning. I suppose we could give this some thought.
I could explore chemical options. I already take drugs for fatigue, stiffness, nerve pain, depression, and bladder control. After much fiddling, we've got the drugs and dosages balanced so that everything kind of works. Do I want to risk bringing down this house of cards to stay awake through Dr. Who?
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.
On days like today, I wonder how I ever managed to get any real work done when I had a day job. There are a bunch of tasks that I need to do something about but can't actually finish, so they don't go away. I need to keep all the balls in the air, remember where I'm at on each task, and what I need to do next. My to-do list (my heroic but inevitably futile attempt to keep cats herded and ducks in a row) looks like acronym soup: ING, LTD, FAFSA, IRS, LoC... and sounds like a recipe for disaster. I'm getting pretty darned whiny about it.
Most of these tasks aren't even interesting or fun. One that's a little out of the ordinary involves calling the power company to tell them my bill is too low. According to them, we have used no natural gas for the past two months. None. Imagine that. Since we have an on-demand water heater and a daughter who doesn't get out of the shower until she runs out of hot water, this seems unlikely to me.
After several weekends of nonstop shoveling, Scarecrow and Tuffy have laid bare the entire living room and dining room floor. We kept more junk than we probably should have, but in our determination to make our belongings fit in the available space, we got rid of a lot of stuff, too. There is one item, however, that has us stumped. Where do we put the passenger seat from the van? It doesn't look that big when it's in the car, but it sits on a riser to accommodate the lowered floor, and when you take it out of it's natural habitat it's ginormous. It needs to be someplace relatively clean, relatively dry, and vermin-free (whippets excepted). We don't have a basement or garage. The seat is too heavy and awkward to haul up the narrow pull-down stairs to the unfinished attic-y space. This being Seattle, the carport and outdoor shed are too damp. It's currently looming over the rest of the furniture in our front room. Bareit thinks it's wonderful.
Assuming we can figure out something to do with the stupid seat, the final step in the remodel-that-wouldn't-die will be getting moved into new office. I jumped the gun a little, putting up a sign I displayed prominently in my office before I retired. I still like it.
We must be having some other place's weather; blue skies, sunshine, the flowering trees getting ready to do their stuff. This is just wrong. It's obviously a mistake. February in Seattle is rainy, chilly, damp, and gray. Mostly gray. Even after living here for 15 years I'm suspicious of spring weather in the middle of February. I fear the bulbs emerging from the soil so early are doomed. I've been permanently scarred by Michigan snowstorms at the end of April. You can't trust this weather. It can't last.
But so what?
The demented whippet is racing madly around the yard, flying through the dog door and into the house with muddy feet, and back out into the yard, sounding like a one-dogpower freight train as he thunders across the deck. Ernie has found a patch of sun. He's trying to get a tan. They're not worried about how long it's going to last. They're enjoying it now. It's good enough for them.
It's good enough for me. I saw a pair of bald eagles out my window this morning. Tomorrow morning I'll bundle up and have coffee outdoors. It may not last, but I'll enjoy it while it does. I didn't want to do my taxes anyway.
Some greyhound friends are planning a walk around Green Lake on the first day of spring. Ironically, it takes forever to make the 3 mile walk with a bunch of greyhounds because so many people stop us with questions, and we talk up greyhound adoption. I'm looking forward to it.
Even if spring is not here yet, for real, it will be here eventually. I'm looking forward to it.
Ernie is 12 years old today. Twelve is not remarkably old for a greyhound, but it's getting up there. He's a little creaky getting up and down, his hind legs are sometimes wobbly, he sleeps more than he used to, and being as how he's a greyhound and greyhounds are world-class sleepers anyway, that means he sleeps a lot. But he's doing OK, considering.
He's had a tough year. Last January his buddy, Iris, died suddenly of a stroke. Then he broke his tail, and had to have it amputated. Twice he's had surgery to remove benign tumors from his thigh, leaving a gnarly-looking scar and saddling him with the name Burger Butt. (OK, I'm the only one who calls him that, but still. It's undignified.) And rather than adopting another laid-back greyhound buddy to keep him company and challenge him to some serious competitive napping, we inflicted a two-year-old whippet on him; a whippet who is cowardly, disrespectful, continually tries to share his bed, and steals his toys. Right out of his mouth.
It really doesn't seem right, somehow.
You shouldn't have to put up with so much, old friend, but we appreciate that you do. Happy birthday, big guy.
I usually use voice recognition software to interact with my computer. It's not the easy way to do it, but for me, at this point, it's easier than the alternative. For a while this morning I was stuck using only voice recognition, and was reminded that there are some things it does only awkwardly, and other things I haven't figured out how to do at all without some recourse to keyboard or mouse.
The keyboard part is easy enough. I use an on-screen keyboard program called Click-N-Type, but there are several others, both shareware and commercial, to choose from. The Windows operating system includes a rudimentary version.
OK, so now I'm relying on the mouse to be both the mouse and keyboard. If I could use a conventional mouse, I'd be all set. Of course, it's never that simple, is it?
I haven't been able to use a conventional mouse for years. I tried switching hands, reprogramming button functions, using different shapes and sizes including several trackballs. Using a mouse was somewhere between awkward and impossible. What I really needed was something I could operate by whacking it with my fist.
After limping along with a series of painfully inadequate solutions, I borrowed a Kensington Expert Mouse from the library. (The King County Library System and Washington Assistive Technology Alliance has a bunch of vision, hearing, mobility, and communication tools that they loan out, so you can try them and see how they work for you before you buy them. How cool is that? Have I mentioned that I love this library?)
I don't know why Kensington calls it a mouse when it's obviously a trackball. I guess that's why I'm not in marketing. Although it's not intended for disabled users, it looked like I might be able to operate the trackball with the heel of my hand, and click buttons by whacking them. I didn't want to spend $99 just to try it -- my hopes had been dashed by promising solutions that didn't pan out far too often for that -- but I was sure willing to check one out from the library, free for nothin'. I tried it for a couple of weeks, it worked pretty well for me, so I bought one.
It's not perfect. The two rear buttons are kind of awkward to reach without functional fingers, and the scroll ring is not as useful for me as I had hoped. The buttons aren't effectively as large as they appear, since you have to hit a fairly small area or they don't click. On the other hand, I can use it in ways I hadn't anticipated. Lately I started putting it in my lap, so I don't have to reach for it. Couldn't do that with a mouse.
I don't intend this as an advertisement for this particular mouse/trackball. Everybody has a slightly different set of abilities and limitations; this solution just happens to fit what I can do. Today. Tomorrow I might be back to looking at what's out there, trying to imagine how I might use it to do what I need to do.
My long-term disability insurance policy requires me to apply for SSDI, and reduces my monthly benefit by the amount I get from Social Security. OK fine, I get that. I applied for Social Security disability, I had my approval letter before my long-term disability kicked in, and they started paying benefits in December. The company that carries my disability policy ought to be pretty happy about that, because it's that much less they have to pay each month. Maybe they are. Hard to tell, with insurance companies.
Anyway, in the course of getting all this coordinated, the insurance company paid more than they owed me, and I have to pay it back. OK fine, I get that. But can they straighten this out by withholding what I owe them from my next benefit check?
Noooooo...
I have to send them a check for the amount of the overpayment. "Future benefits will be withheld until [my] full reimbursement is received."
"A pre-addressed envelope is provided for [my] convenience."
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
I was all set for an argument. For three months I've been more-or-less happily paying $266 for COBRA continuation insurance coverage, with the ARRA subsidy covering 65% of the cost. Then, browsing around the website for the company that administers the coverage, I see that next month my premium is going up to almost $800. Obviously a mistake -- in December legislation extended the ARRA subsidy to 15 months, and I'm only three months in -- but getting these mistakes straightened out is never easy. Are you kidding? Near as I can tell, this is a company that handles red tape for insurance companies! So I went into this loaded for bear. You know how you get? You've been over and over the argument in your head at three in the morning, getting wittier each time. (Am I really the only one who does this?) I was ready.
It doesn't help that the recent legislation has generated a lot of calls, so I get to wait on hold. Not all that long, truth be told, but still. A cheerful representative, who sounds like she can't possibly be old enough to solve my problem, finally answers. I give her the scoop, and brace myself for the inevitable hassle.
No problem, she explains cheerfully. It's not a mistake. The website doesn't show the subsidized premium, but your invoice will be correct. Then she asks if there's anything else she could help me with today.
The meat'll do to eat and then the hide'll do to wear The meat'll do to eat and then the hide'll do to wear The meat'll do to eat and then the hide'll do to wear I like to say that
Old-timey music is not intellectually pretentious.
And a bonus tune, while I'm on a tear. Devil Eat The Groundhog is my current favorite old-timey tune of all time, and it just happens to have a groundhog in the title. How cool is that? Scarecrow and I used to play it for the Eclectic Cloggers, but this looks like a lot more fun. It's such a typical session at a festival. I love the way the guitar picks it up and joins in partway through. Needs banjo, though.
There are buds on the rather forlorn-looking star jasmine by our front door. It was looking so puny last fall that I wasn't sure it was going to come back this year. I'm happy to see signs of life. It blooms early and smells wonderful. Whenever the groundhog says, spring will be here eventually.
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.
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."
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.
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.
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.
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.
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.
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.
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.
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.
They're taking inventory today in the "Bob's Books" department of Bob's Books and Adult Day Care Center. Everybody is busy in the warehouse. They brought in pizza for lunch, and got enough for the "Day Care Center" department too, which is nice because it's just me, and I'm not helping with inventory.
I guess with the end of the year and all it's a good time to take some sort of inventory, a summing-up of the year just past. That's what newspapers (remember them?) and magazines and TV and radio do this time of year; seems like there's no getting away from it. But me, I'd really rather not just now. I had a couple of really dark days right after solstice (yeah I know -- everybody did) and I feel like I'm still climbing back. For people with progressive disease, reflecting over the previous year and anticipating the coming year is something you want to be very careful about. A year ago I could do a lot of things I can no longer do. By the end of next year I'm unlikely to be able to do everything I can do now. I don't think I'm being negative or defeatist or giving up, or failing to be hopeful or positive or tough or determined or inspiring or any of that. It's a progressive disease. That's how it works. I'm just sayin'. At this point, for me, a good day is one that's not a whole lot worse than the day before. A good year would be one that's not a whole lot worse than the last. I'll plan for the future as best I can, but getting through today is about all I can manage. If I can do that, we're good. One day at a time.
So, as days go, yesterday was a pretty good one. And old friend from southern California was in town visiting her sister and brother-in-law, and they all came by for a visit. She brought Lucy the golden retriever, which Ernie and Bareit thought was a very fine thing. Tuffy kindly baked us a batch of brownies. I think we managed to save her a couple.
The solstice is past (yes, we had a lovely holiday, thanks for asking) and each day is a little longer than the day before.
Even though the coldest weather is probably still a month or so off, here in Seattle we'll start seeing the first signs of spring almost before the last of the holiday lights are put away.
I've lived here 15 years, but I still worry that the buds and shoots that start to appear in February and March are way too early.
In Michigan, they'd be goners for sure. Here, most years, their optimism is justified. We'll get some cold, maybe even some snow, but spring will be here before too long.
I'm ready. I love winter, but I'm always ready for spring.
Whatever you celebrate this time of year, I hope it is a time of joy and peace.
Photo credit: Tuffy, last winter, in the appealingly-named Swap Creek Park, across the street from our house.
Scarecrow just left for the grocery store. He won't be gone long. It's only a mile away, and he's only going to pick up a couple of things. So I'm here by myself.
It's scary.
I haven't been a quadriplegic for very long, so I'm still getting used to it. Being entirely by myself, nobody within hollering distance, is probably a bad idea. Since I'm very good at imagining, I can imagine all kinds of things that might happen that would require opening doors, or pulling plugs, or turning knobs, or pushing buttons, or calling 911, or, oh, I don't know, anything. None of which I can do. None of these dire circumstances are very likely, I know, but still.
I don't like this. I always liked being by myself. I got testy and unpleasant if I had to be around other people all the time. I do not like being entirely dependent on another person, to an extent I never could have imagined.
Oh never mind. He's back. I know we need to make provision for times like this, I know I know I know. I know we need to get some respite time for Scarecrow. I know we do. Tomorrow for sure. I'll think about that tomorrow.
There was a time when Christmas at our house was occasion for great bustle and festivity. House decorated inside and out, a tree big enough for the eclectic collection of ornaments we've accumulated over the years, artfully (if I do say so myself) wrapped presents piled underneath, hand-lettered cards, cookies, food, the whole nine yards. I was really big into Christmas.
Then, at some point, I got to wondering why we were making such a big deal out of a Christian holiday when we aren't even nominally Christian. Somehow devoting that much energy to a Winter Festival of Crass Commercialism and Greed was not a particularly appealing alternative. That's not to say I didn't see anything to celebrate this time of year. Living for years in gloomy, dreary Lansing, Michigan, and then in gloomy, dreary Seattle, I would always count the days to the solstice, anxious to see the sun (gloom permitting) for a little longer each day. OK, so why not just call a solstice a solstice, and celebrate that instead? We can still have the house decorated inside and out, a tree big enough for our collection of ornaments, presents, cards, cookies, food, and everything else. Most of the holiday symbols (lights, evergreens, wreaths) aren't inherently Christian anyway, although I'm not entirely sure about red-nosed reindeer. Over the years we've developed our own traditions into a celebration that we find satisfying and meaningful. It's more about what we're celebrating, and less about stuff. Although there's a little bit of stuff, too. I mean, get real.
So we usually do a different kind of holiday anyway, and this year it will be even more different than usual. Because of the Remodeling Project That Wouldn't Die, we have piles of construction stuff in our front room. Since our decorations are all in storage, we won't have the house decorated inside and out, and we don't have anyplace to put a tree. Since the solstice isn't a holiday for anybody else, we may even have a construction crew at work. I suppose we could tell them not to come, but if it gets The Project one day closer to being done, we'll celebrate around them. So we'll be doing something different this year, although I don't yet know what, exactly.
Maybe we'll just celebrate by lighting candles on the longest night of the year. We'll build a fire (Seattle air-quality permitting). We'll be together. We'll be warm, and dry, and fed. That would be enough.
Yesterday I had an appointment with the physical therapist. I've worked with this woman for years, checking in with her every time the Red Queen challenges me to another race. She's not only very good at what she does (the therapist, I mean, not the Red Queen, who is also very good at what she does, which is why I need to see the therapist), she's a great person as well. I like her a lot.
The reason for this visit is that, once again, I'm looking for another way to control my power chair. I was in for the same problem just six months ago, but I've lost so much function in my arms and hands since then that the solution we cobbled together is already not working for me anymore. We talked about solutions that I could probably afford, which might work for a little while. And we talked about options that might provide a longer-term fix, but would probably exceed the maximum my insurance will pay for durable medical equipment. All of which assumes I can get my COBRA continuation coverage set up, which is a whole 'nother rather tiresome story. The upshot of all this is that we will talk to a DME provider, find out how this might work, and what it might cost. And I'll talk to the COBRA administrator to get the insurance thing straightened out. You know, dealing with a disability is bad enough, but doing what you have to do to be able to deal with the disability is a real pain in the butt!
Today is Tuffy's last day as a teenager. Tomorrow she turns 20.
As teen years go, I have to say I think we got off pretty easy. I have no teen-zilla horror stories to relate. Aside from the occasional Sunday night emotional core meltdown, she has always been even-tempered (for a teenage girl-type person) and kinda nerdy, taking nerdy classes, playing a nerdy instrument (viola), and participating in a nerdy sport (wrestling, two-time All-American, hence the nickname). She has never felt obliged to do what everyone else does, and doesn't care about being cool. Gotta like that, in a kid.
Still, I'm relieved to no longer be the parent of a teenager. I don't understand her preference for English and philosophy and drama classes instead of chemistry and zoology, but I don't have to -- she's 20 years old. I don't understand going to the gym six days a week, doing mixed martial arts, but I don't have to -- she's 20 years old. She's learning to go her own way, and I'm learning to let her do it. It will be an adventure for both of us.
I have a rather embarrassing question to put to you long-time bloggers: Does your blog ever run away with you?
Is it just me? Sometimes I start a blog post with a particular, if vague, topic in mind, and without realizing it wind up running off at the pencil about something entirely else; or wind up making an entirely different point than the one I set out to make. That supposes, of course, that I set out to make a point, which I frequently do not. Sometimes I get to the end of the post before I realize I did, in fact, have a point to make. Of course, there are times I intend to make a point but don't quite manage it. That happens a lot, but that's something else. This is like a horse that gets the bit in his teeth. You're going to go where he takes you, and there's not a darn thing you can do about it.
There are times when I'm partway through a blog post and realize I've changed my mind, or I've talked myself out of what I thought I was going to say. Or I suddenly figure out something I didn't understand, when I may not even have realized I didn't understand it. I admit it's not usually an insight into the inner workings of the universe -- more like what I'd have to call a Blinding Flash of the Obvious -- but an "aha" moment, however minor.
I'm new to this blogging stuff. I spent most of my working life earning a living by writing, but sitting down to write about whatever I want is a totally new adventure for me. It takes me unexpected places. I tell people I don't know things about myself I didn't even know I knew. It's kind of scary.
Today I finally get to cancel our family cell phone service. I've really been looking forward to this. (Sounds kind of pathetic, I guess, but hey, you've got to get excited about the little things.) We had a pretty cheap plan for three phones, but since I can't use a regular phone anymore I thought I'd see if we couldn't do better with a plan for just two phones. Looking back over the last couple of statements to see how much we used the darn things, I found we were averaging, maybe, 10 minutes a month for the three of us. We don't talk on the phone much. So, yeah. We switched two of the phones to pay-as-you-go, and today I get to cancel the service.
While our house has been torn apart, we've had a bunch of stuff stashed in a self-storage place. I thought it would only be for a month or two, but it's been a year. In the next week or two, our remodel should be close enough to being done that we can get that stuff out of there. I'm really looking forward to that, too.
As an aside, if you can get along without something for a year, you've got to wonder how bad you really need it. There've been surprisingly few things we wished, at some point, we had handy, and only one or two items we needed badly enough to go down and retrieve. I think there's a lesson lurking in this somewhere...
While it seems kind of Scrooge-ish to be looking for ways to pinch pennies this time of year, the transition from gainful employment to retirement benefits made some significant changes in our budget. We've had to distinguish between what we need, what we want, and what we really can do without. I'm not sure that's bad. We can do without cell phone service we don't use. We don't need to rent a storage shed for stuff we don't need. With my birthday, my dad's birthday, Tuffy's birthday, solstice, and my brother's birthday coming one after the other, it's easy to get crazy. Tuffy's tuition is due in January. Let's keep our priorities straight. We'll still buy presents. We just won't be spending money for the sake of spending money. We'll try to focus on what we're celebrating, and why.
Now, if you'll excuse me, I have to cancel my cell phone service...
It's funny that I still think of weekends as weekends. Even though I go in to work every day with Scarecrow, it's not like I do any. Still, Scarecrow doesn't have to work tomorrow, so today's a virtual Friday. I still like them.
The chore for today was signing up to continue health insurance coverage for Rowan and me under COBRA. With the 60% American Recovery and Reinvestment Act subsidy it's still going to cost more than I paid as an employee, but not nearly as much as I had feared. Of course, the subsidy only lasts nine months, but you can just call me Scarlett -- I'll think about that tomorrow.
The chore for tomorrow is to renew my Disabled Parking permit. The task itself is no big deal; Scarecrow will just stop in at the doctor's office for a signature. It's just odd to think that it's been five years since I got the darn thing. When I got it I could still walk, a little, using Scarecrow's arm for support. I could still drive, getting my manual wheelchair in and out of the car myself. I still had a day job, and went in to work every day. I brought home a paycheck that I'd earned with my own little hands. I could still play music. Recreationally. At least, it was recreation for me. My family would probably have called annoying noise -- it was a banjo, after all -- but they were kind enough to put up with it. (I might also mention that I have accumulated a serious pile of annoyance credits. Scarecrow plays accordion.)
It's realizations like this that sneak up and smack you upside the head, sometimes. You're going along, doing an everyday chore, minding your own business, and whap.
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