31 December 2009

His own heart laughed

"His own heart laughed;
and that was quite enough
for him."
     --Charles Dickens
     --A Christmas Carol

29 December 2009

Taking Inventory

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.

23 December 2009

Winter!


I love winter!

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.

20 December 2009

Home Alone

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.

18 December 2009

A Different Kind of Holiday


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.

17 December 2009

Red Queen Redux

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!

14 December 2009

I Have Been So Looking Forward to This

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.

09 December 2009

The Runaway Blog

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.

Is that why so many people do this?

07 December 2009

Pinching Pennies

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...

03 December 2009

Virtual Friday

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.

I need to stop and think about that for awhile.

01 December 2009

Instant Gratification


I have always imagined that Paradise will be a kind of library.
-Jorge Luis Borges



I love libraries. I remember going to the old Santa Monica Public Library when I was a kid. The childrens books were downstairs, around the corner from the main entrance. We could only go to the library when my mom was in town running errands. Most of the time it was the bookmobile, at the end of our street on Saturday afternoons.

There was the chemistry library and the biomed library at UCLA.

There were afternoons sitting on the floor of the kids' section of the Lansing Public Library, browsing through books to take home to read to Tuffy.

For a while, I even had a job where I spent much of my time digging up information in the Library of Michigan and the Michigan State University Library. How cool is that? (Unfortunately, not cool enough to put up with a sociopathic boss. But it was a pretty cool job.)

In Seattle, of course, librarians are revered -- one even has her own action figure. Living out in the 'burbs, our local libraries are part of the King County Library System (KCLS). When we moved to town, we got library cards before we unpacked our stuff. Browsing for books is one of the best possible ways one can spend an afternoon.

Book browsing is, however, a hands-on activity. It's just not as much fun when you have to ask somebody to take the book off the shelf, open it for you, and turn the pages so you can read bits and decide if you want to check it out. Scarecrow is willing to help me, but I don't do much in-library browsing anymore.

For me, the coolest thing about the library these days is online access to e-books. I can check books out, download them, and read them on my laptop -- no hands! It's all about instant gratification. On Thanksgiving day I ran across a reference to a book that sounded interesting. The library was closed, but the web site was open. They had the hardcover, the audio book, and a digital version. Five minutes later I was reading it.

Reading a book on my laptop is not as satisfying an experience as holding a physical book in my hands, I admit. But it's a lot better than whining about how I have nothing to read!

Downloading audio books has the same instant gratification factor and no-hands accessibility, and depending on who reads them, they can be pretty good (or really terrible). The thing is, if you fall asleep when you're reading a physical book or an e-book, it stops turning pages so you can pick up where you left off. An audio book just keeps on reading.

KCLS even participates in an adaptive technology loan program. I got to borrow a trackball, to see if it would work for me, before I went out and bought one. How cool is that?

I love libraries.

Our whole American way of life is a great war of ideas, and librarians are the arms dealers selling weapons to both sides.
-James Quinn

In the nonstop tsunami of global information, librarians provide us with floaties and teach us how to swim.
-Linton Weeks

25 November 2009

Why Doesn't My Life Have a "Ctrl" Key?

I admit it. I have always been a control freak. If you're not doing it my way, you're doing it wrong. I know this is not an attractive aspect of my personality. I would have been a nightmare micromanager, had I ever really been a manager, which, fortunately, I was not. Even now, calendars and planners and to-do lists are my life, although the plans and tasks are for someone else to carry out. For people like me, MS is a total poke in the eye with a sharp stick.


It's not just the unpredictability of the disease, the symptoms that flare up unexpectedly, the complete inability to anticipate what I will, or will not, be able to do, even a few hours in advance. That's bad, but, for me, that's not the worst.

It's not even having someone else turn me over in bed, or adjust my clothes, or choose a bite of food for me. I am grateful that I have someone to do this for me -- I am I am I am! -- and I try not to complain unless it's causing physical pain. I try not to complain, even if it's not the way I would do it. And it never is. Even that is not the worst.

The worst is watching Scarecrow prepare Thanksgiving dinner.


I am an ungrateful wretch, I know, to even think it. Scarecrow has taken over cooking responsibilities like everything else he does for me: cheerfully and without complaint. If he resents the imposition, or the interruption, he never, ever, lets on. Unlike housework, which he doesn't like any better than I ever did, he finds cooking entertaining. He is looking forward to this.


Truth be told, it will be OK. It's just for the three of us -- no guests, no family, no distractions, no pressure. Although Scarecrow cooks with more enthusiasm than skill, he will manage well enough. I'm sure he won't leave the water running in the sink and flood the kitchen and dining room and laundry room again this year. He cooked Thanksgiving dinner last year, and it turned out fine. It's just one meal. We are fortunate to have it. Let's keep some perspective here. If he needs help, he will ask for it. If he doesn't ask, I will remain respectfully, gratefully, silent.

Even if he doesn't do it the way I would. He's doing it. That's good enough. That's plenty good enough.

24 November 2009

It's Amazing What a Deadline Can Do

This is an anniversary, of sorts. The construction permit for the Remodeling Project That Wouldn't Die expires today. They tore into our house last December. It's been almost a year. Granted, we had a long list of things to fix, and they had to work around us, but still. I'm ready to be done. I'm tired of plaster dust. I'm tired of having plastic and cardboard taped to the floors. I'm tired of having our clothes on shelves in the dining room. I'm tired of the kind of utility bills you get when you have a sheet of plastic over a big hole in the wall in the dead of winter. And we're out of money. I'm so ready to be done.


The permit's imminent expiration seems to have elicited a flurry of activity. Sheetrock last Friday, mud on Saturday, paint on Monday. The electrician was at the house early this morning. We should have the inspector's signature on the permit by the end of the day. Then we're done, right?

Um. No.

There is still a bunch of stuff the inspector doesn't care about; finishing the trim and paint inside, getting the icky stuff off the floor of the office and finishing whatever we find underneath, painting the new siding outside, and, what may turn out to be the most challenging aspect of the whole project, coming up with a fence that will keep the whippet in. With the permit signed, there's a chance we'll revert to our previous leisurely pace of progress. In fact, realistically speaking, with the holidays and all, it's more than a chance. But we'll get there. Eventually. We're close. We're so close.

20 November 2009

Cake, or Death?

When you were five or six, could you ever, ever, have imagined it would be possible to forget your own birthday? Back then, I started looking forward to it in February! We didn't usually have a party, but you got to choose what we had for dinner, and you were another year older, and it was a big deal!

It's my dad's birthday next week. Turning 89 is a big deal, especially since it didn't look like he was going to make it to 88.

It's not that I mind birthdays. I'm not birthday-phobic, or anything, and they're a lot better than the alternative. I just forgot.

Yesterday I had an appointment with the occupational therapist. It was mostly to figure out if I could get my insurance to pick up part of the cost of a shower chair, which they may or may not do. Since we were there, it was a chance to ask about some of the other questions the Red Queen has posed to us lately. I guess it's reassuring that there aren't any magic answers, that the solutions we've cobbled together are likely to be as good as anything the therapist can suggest. That's usually been the case. Still, it's worth asking. You never know. As bizarre as these problems are, we can't be the first ones to have them.

So I wasn't thinking about birthdays. It wasn't until I went to Facebook, and saw that Facebook had very thoughtfully reminded all my friends about my birthday. You'd think it could have reminded me as well, wouldn't you? So I could brace myself for it, sort of thing?


When we get home tonight, they should have the last of the sheetrock hung in the office and living room. A little mud and some paint, and it will start looking like a house again, instead of the inside of a barn. Not a moment too soon. Our building permit expires on Tuesday. I remember being incredulous when the contractor initially estimated that the construction phase of this project would take about six months. It's been almost a year. I'm ready to be done. As birthday presents go, this is a pretty good one.

Cake, or death? I think I'll go with the cake, thanks.

18 November 2009

Why?

A theme that seems to turn up, sooner or later, in a lot of MS blogs is, "Why?"

Not "Why me?" as in, "Why not somebody else?", more like "What was it that caused me to get this stupid disease?" or, "Why has my disease course been so benign (or aggressive), and somebody else's so aggressive (or benign)?"

Since nobody knows what causes MS, it's hard not to wonder. Maybe it's just my talent for self-flagellation, but... was there something I did? or didn't do? Not that I purposely brought it on myself (really, let's not be stupid!), but did I somehow, inadvertently, do something wrong; make the wrong choice? Could I have spared myself some of this grief?

Some of the people who write about MS point to something in their past that they suspect kicked off their battle with the disease -- an event, an injury, an illness. I don't remember anything like that.

A genetic predisposition? Not much I can do about that.

Growing up the wrong gender, at the wrong latitude? Not much I can do about that, either.

Exposure to something in the environment? Probably. Who knows?

Would it have been different if they were putting people on disease-modifying drugs when I was first diagnosed? Would Betaseron, or Novantrone, or Tysabri have been more effective if I had started on them earlier? Did I choose the wrong drugs? Would Avonex or Rebif or Copaxone have worked better for me? Or did I just spare myself a lot of hassle and a lot of money?

I try not to go off on this wild goose chase. There aren't any answers. There maybe answers some day, and there will be plenty of time to beat myself up then, if it turns out beatings are in order. For now, it just makes me crazy. No need for that. I'm crazy enough.

16 November 2009

Stormy in Seattle

Blustery, wet, gloomy, dark. When it's muddy outside, the dogs grow extra feet. I don't know how they do that.

It's not windy all that often in Seattle, so when it is, all the tree limbs that have been hanging on by a thread take the opportunity to land heavily on something inconvenient. Like our roof.

We awoke to a loud THUMP in the middle of the night last night, followed by another a short while later. Our old greyhound slept through it all. At 11 1/2, Ernie is getting a little hard of hearing. The ever-vigilant whippet heard it all right. He started shaking, and burrowed deeper under the covers. He's vigilant, but something of a coward. He doesn't like loud noises.

When, without canine backup, Scarecrow went to investigate, he didn't find any signs of mayhem inside the house. Since it was windy, we figured that one of the cottonwoods along the side of the house had dumped a limb onto our roof. Again. They're bad that way.

This morning Scarecrow did indeed find a limb on our roof. A really big one, several medium-big ones, and a whole bunch of little ones. Most of a fair-sized tree, looked like. And the hole they made when they landed. It's a small hole, and a couple of split shakes. They didn't do as much damage as they might have, but we'll still have to get it fixed.

They're saying it will be even windier tonight; gusts up to 50 miles an hour, they say. I think I'll hide under the blankets with the cowardly whippet.

14 November 2009

Bob's Books and Adult Day Care Center

If I'm retired, why do I still go to work 8:30-5:30 M-F?

It's a little hard to explain, even to myself. It's the result of a twisted combination of unusual circumstances. The short it answer is: You do what you gotta do.

Here's the deal. Scarecrow works for a book distributor. It's a company of, maybe, six people, working in a warehouse full of books, with some offices along one wall. There are more offices than there are people. There is also an accessible bathroom. Scarecrow's employer (Bob) lets me use one of the empty offices, and his Internet connection, during the day. So I go in to work with Scarecrow. I read, pay bills, blog, watch movies, whatever. Scarecrow has an office upstairs. If I need anything (like help getting in and out of the bathroom), I send him an IM. When Scarecrow is finished for the day, we go home. So I go to work every day, even though it's not my work, and I don't actually do any.

Trying to untangle the unlikely chain of circumstances that evolved into this routine makes my head hurt.

It started when I stopped driving. Getting to work -- my work -- by public transportation was such a pain in the butt that I started working from home. I worked for a network software company, for Pete's sake. If I couldn't work from home, who could? That was OK as long as I could still get in and out of our tiny, disability-hostile bathroom by myself.

Then, couple of winters ago, our part of town lost power for about a week. (It was nine days, actually, but seemed longer.) I couldn't work from home. Since it was way too cold to sit around in a dark, unheated house, I went in to work with Scarecrow. I took my laptop, camped out in an empty office, and found that I could work as well from the warehouse as I could from home. Better, even, because of the accessible bathroom. Our power eventually came back on, but I kept going in to work with Scarecrow.

Since I retired, I still go in to work with Scarecrow. I just don't do any work.

My employer was amazing for letting me do this for as long as I did. I was lucky to have a job where it was possible. I was lucky Scarecrow had a job where it was possible. Scarecrow's employer was amazing for letting me do this, and for allowing Scarecrow the flexibility to help me out during the day. Each of these circumstances, taken alone, is kind of unlikely. Having them all occur together still has me shaking my head in amazement. It's not a solution you could ever plan. But you do what you gotta do, and that's what we did.

So it's Saturday. It still seems like a weekend to me!

11 November 2009

Taily Ends

I spent the last few days dealing with what I hope will be the taily ends of several ongoing projects.

The nice lady from the insurance company called on Friday to tell me that my claim for long-term disability was approved. I'm so relieved. I need to remember to fax them my SSDI approval letter.

I finally signed up for a Skype phone number. I used to have a VoIP soft phone for work, which let me use my headset to call regular landline or mobile phones from my computer. Since I don't have my work phone anymore, and can't pick up a regular telephone handset or cell phone, I was pretty much incommunicado, phone-wise. It was nice while it lasted. Skype and Dragon Naturally Speaking don't play all that well together, but for the price I'm willing to put up with a little inconvenience.

We finally got the van in for service on Monday. For the first time since we bought it. Two and a half years ago. Considering we need this van to run pretty much forever, this is not the way to make that happen. It took us a while to figure out the logistics. The mechanic we've taken our cars to in the past is very good and relatively cheap, but very slow. We'd just drop the car off and let them keep it until they got done with it. Can't do it that way anymore. Most cars can't manage my power chair. Without that van, I'm stuck wherever I'm at. Fortunately, this time, it was a pretty quick service job. The van is still on warranty, so they're not motivated to find a lot wrong with it. They did the work while we waited. As car dealership waiting rooms go, it wasn't bad.

Yesterday we met with our contractor. Our construction permit, which was good for a year (!), expires before Thanksgiving, so we are motivated to get this project wrapped up. Also, we're running out of money. The good news is it looks like we'll be able to reuse the built-in bookshelves and desk we ripped out of the old office. It's much nicer than what we could afford to replace it, in addition to which I really hate throwing away perfectly good stuff. The material from the fence we had to rip out should be reusable as well. Not that the escape artist whippet pays much attention to the fence anyway.

06 November 2009

Out of the Loop

They sprung mom from the hospital yesterday afternoon. As usual, it was my brother who took off work to do the fetching and carrying and running around. He's a great guy, my younger sibling. We're all lucky he lives close enough to help, and that he does it without complaint. It's not like I could be any help if I were there --  I'd be underfoot, more like -- but I'm sure as heck no help from 1200 miles away. In fact I'm just one more chore, because he's got to call me and tell me what's going on. This is not an MS thing. It's an Aging Parents Living Far Away thing. It's a problem for which I wish I  had a solution.

Anyway, she's doing OK. For now.

Since I can't do anything useful, I might as well do something fun. We're off to a UW volleyball game against Stanford. I'm still getting used to this whole spectator sport thing. It seems odd to critique the game played by these tall, slender, athletic people, when I myself could never play volleyball worth a darn. But for Pete's sake, what's up with all the service errors?

05 November 2009

The Bright Side of Getting Laid Off

Technically, tomorrow is my last day of gainful employment. I've been using up unused sick time, accumulated vacation time, and short-term disability since the middle of June, but I was still technically an employee. After tomorrow, I won't be.

The benefits lady called to prepare me for the termination letter, so I wouldn't feel bad when I got it. She's nice that way. In talking about some of the paper that would need to be shuffled during this transition, she mentioned the American Recovery and Reinvestment Act subsidy for COBRA expenses. I told her I didn't think I was eligible. The deal is that ARRA subsidizes 60% of the cost of health insurance under COBRA if you're laid off. When the stimulus package was first passed, I checked with the MS Society to see if I would be eligible if I retired on disability. Reading the language in the act, it didn't look like I would be. The MS Society concurred.

The benefits lady said it was all rather confusing. She went off to check with a couple of people.

Well.

According to my employer, this is not a voluntary termination. I would continue to work if I could. They're laying me off because I can't. And since they're laying me off, I'm eligible for the COBRA subsidy.

Now, if I were a pissy kind of person, I might mention how it would have been nice to know this before I paid for Tuffy's insurance for fall quarter through UW, since it was less expensive than covering her on the unsubsidized COBRA. With the subsidy, COBRA would have been the better way to go. Fortunately, I'm sufficiently ecstatic about finding out that health insurance will cost 60% less than I had expected that I'm willing to let it go.

Takes a good bit of the sting out of getting laid off.

04 November 2009

Gettin' Old Ain't For Wimps

My mom fell down a couple of brick steps on Monday afternoon.

She was puttering around in the garden. It was starting to get dark, she was getting tired, and her vision has deteriorated to the point where she's probably legally blind. She tripped and fell.

She's OK, for a given value of "OK." She didn't mention it to my brother when he talked to her on the phone Monday night, but by Tuesday morning she was in enough pain that she thought she'd better see a doctor. Fortunately, to everyone's relief and amazement, she didn't break anything. They're keeping her in the hospital for a couple of nights so they can give her some serious pain meds.

My mom turned 87 a couple of months ago. She's had assorted cardiac and respiratory problems, colon cancer that left her with a colostomy, an infection that cost her the tip of her index finger. Despite several eye surgeries, she can't see worth crap.

She and my dad, who will be 89 in a few weeks, still live in the same house they've lived in since I was a toddler. It's mostly all on one level, but elsewise not particularly accessible. They get some help with housecleaning and heavy lifting in the yard, and my niece lives in an apartment on the property, in exchange for checking in to make sure they're vertical before she leaves for work. They do everything else themselves. My dad still drives, which makes me crazy.

My point (I'm just figuring this out myself) is not that I'm worried about a potentially dangerous living situation, although I am. There are resources available to them, ways to make their home safer, and even, dare I mention it? other residence options they might consider. Believe me, we're working on it. We're working on it. Suggestions along these lines are met with fierce, if not to say rabid, if not to say furious, resistance. They're a couple of stubborn, cranky old... well, never mind. That's not my point.

My point is that gettin' old ain't for wimps. Old age is progressive too, you know. When I think of what my mom and dad face, every day, day in and day out, without complaint (much), I feel like a total whiner. I mean, they're tough! I don't think they make them like that anymore.

But guys, for criminy sake, put a handrail on those steps, willya?

02 November 2009

Another Quiet Howloween

We got no trick-or-treaters on Halloween. Not one.

This year I can tell myself it was because we didn't have any lights on by the front door, because they're not wired up yet. But that doesn't explain why we didn't get any trick-or-treaters last year. Or the year before that. Or the year before that. In fact, since we moved into this house, we have never had any trick-or-treaters. Not one.

I admit we have kind of a steep driveway, but it's not that long, and there are two houses at the end of it. I wonder if they get any trick-or-treaters at the house next door? Or the house across the street? I'm trying not to take this personally. I won't let myself become bitter.

I guess we'll just have to eat this whole bag of Reese's Peanut Butter Cups. Just like last year. And the year before that. I thought about not buying treats, but if I did that, sure enough, this year we'd be Halloween Central. I couldn't take the chance, could I?

The weekend was not without excitement, however. Our ever-vigilant whippet saved us from a very scary doormat. It will never threaten us again.

29 October 2009

A Purple Bedroom


Tuffy moved into her new bedroom last night. It isn't new exactly, because it's mostly in the same place it was before, but it was shuffled around, losing space to one closet and taking some from two others.


And painted purple, and a color I would have to describe as dark toothpaste. But she likes it, and she has promised to paint it again before she moves out. She's almost 20; how much longer will she be living at home, do you think?

When we get home tonight, I expect they will have ripped into what used to be the master bedroom. The last step in this interminable remodel will be replacing one window with two, and turning a small-ish bedroom into a very small but accessible office.

So, after 10 months, we've got:
  • A carport we can get into with the van, even when the power chair is loaded. Before, the van would bottom out at the break between the steep driveway and the level carport. If I wanted to go anywhere, Scarecrow would move the van to the bottom of the driveway, I'd go down the driveway in the chair, and we'd load the chair in the van at the bottom of the hill. Rain -- this is Seattle, remember -- or shine. Coming home we'd do the reverse. I do not miss this procedure even a little bit.
  • A ramp to the front door, instead of two concrete steps.
  • A front door with a minimal threshold, that opens to the center of the room. I used to have to negotiate a very lumpy threshold and immediately make a 90° turn (usually with the assistance of two dogs who were very happy to have us home) to avoid running directly into a wall.
  • An on-demand hot water heater. With an adolescent daughter, never running out of hot water is not necessarily a good thing. It was a trade-off. We needed the space.
  • A generously wide pocket door between the hall and the new master bedroom. I can even go through at a slight angle.
  • An accessible bathroom, about which I have gone on at great length before. The novelty has not even begun to wear off.
The last step will be turning the space that's left into a very small office, since there's not enough to even pretend to be a bedroom. That's where we're at. So close...

27 October 2009

A Chat With The Red Queen

"Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else - if you run very fast for a long time, as we've been doing."

"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place."
Lewis Carroll
Through the Looking-Glass

I love adaptive technology. I really do. I love all the gadgets and machines and doodads and software. I don't like needing them, understand, but I love messing with them. And when I do need them, I'm lucky they exist and that I have access to them. I know that. But I still feel a lot like the Red Queen. In using adaptive technology to try to keep up with a progressive disability, I'm running as fast as I can just to stay in the same place.

As I found it harder and harder to haul my sorry butt from one place to another, I went from using a hiking stick as a hiking stick, to using a hiking stick as a cane, to using forearm crutches, to a manual wheelchair, to a power scooter, to a massive shiny black power wheelchair the size of a small subdivision that can, if required, drive up a tree. Not that I have much call to do that, but you get my drift.

A few months ago I was having trouble using the joystick to control my chair without leaving devastation and personal injury lawsuits in my wake. So, fine. Assistive technology to the rescue. The original control module has a garden-variety joystick and seven buttons, four of which actually work, two of which I actually use. I try out a couple of alternative joystick-like devices, find one that seems like it will work a little better for me, and add a couple of micro-switches so I can turn my chair on and change modes by just bonking them with the side of my fist. $1500 later, the people and property in my immediate vicinity are considerably safer.

Now, a couple of months later, my chair is starting to go unpredictable places again. Time, already, for another run with the Red Queen.

Every time I find that my previous assistive technology is no longer doing the job, I wonder how long I will be able to use the next ridiculously expensive device. I feel very selfish to be spending all this money on myself. With a kid in college and the adjustment to disability income, we could easily find other uses for it.

That's just the race for a mobility solution. For me, there's a whole 'nother race for a way to use the computer, and another to do pretty much anything else you normally do with your hands or arms or legs. Other people are running different races; maybe trying to keep up with deteriorating vision, or a bladder that behaves badly, or an unreliable short-term memory.

Every time I come up with a new problem, I fantasize that someone has already invented a magic solution. After all, I can't be the first person to have this problem. Thus far, there usually has been a solution available. There might even be a dozen of them. That's not to say there's one that will work for me the way I hope it will.

What I can do, and what I need to do, is different from anybody else, so a solution that will work really well for me (and Scarecrow) is different too. Sometimes the best solutions, for us, are ones we stumble across ourselves. For example, the finger-impaired among us can buy a gadget that straps to your hand to poke the keys on the computer keyboard. Since we probably also have trouble turning the pages of a book, there are several devices on the market of different design (and price tag) that will do that.

I use the eraser end of an unsharpened pencil, myself. I prefer an octagon shaped cedar wood casing, for aesthetic reasons, but there is room for personal expression here. You can even, in a pinch, use a pencil that someone has thoughtlessly sharpened, but be careful about using it to scratch your nose. It's really the eraser end that's the functional bit. An eraser that's been sitting around long enough to be oxidized and hard works best for poking keys on a keyboard, because it doesn't fall apart and leave crumbs. A new eraser that's soft and kind of grippy works best for turning pages.

There you go. My favorite home-grown assistive device. Scarecrow bought six 12-packs several years ago from Costco (I have no idea why) for less than eight bucks. We still have at least 5 3/4 12-packs left. In my race with the Red Queen, an unsharpened wood pencil still works for me where several more elaborate, and far more expensive, devices have been left in the dust. Gotta like it.

So, the eraser end of a wood pencil is my favorite home-grown assistive device. What's yours?

23 October 2009

This Is Not a Rant

I'm not going to rant today. Well, maybe I am. A little bit.

I finally opened the envelope from the long-term disability company. It did indeed have a many-page form asking me to explain why I think I'm disabled, and why I don't think I'll be getting better anytime soon. It's like déjà vu all over again. Didn't I already submit all this information for the short-term disability claim? It's the same company, fer Pete's sake. Don't these people have a photocopier?

They say my neurologist didn't fill out the form they faxed to her, either, and they want me to bug her about it. Hello? It's exactly the same form she filled out, for the same company, about the same person with the same condition, a month ago. No wonder physicians feel like they're inundated with paperwork.

But I'm not going to rant. It's Friday. If it's a gloomy, wet weekend, which it looks like it will be, Scarecrow can build a fire, we'll have a single malt scotch, and listen to The Swing Years And Beyond on NPR. If you had told me, when I was 18, that I would consider this a hot Saturday night date, I'd have asked to be euthanized on the spot. Now it sounds kind of nice.

21 October 2009

A Magic Number

Today I finally got around to going to the Social Security web site and using the magic number they sent me at the end of last month to create a new magic number which I will use for access to the web site. Really. They set me an eight digit number, which I used to create a seven digit password. One that will be easy for me to remember, but not my Social Security number, or my address, or my phone number, or the address or phone number of anybody I know, or my birthday, or the birthday of anyone in my family, or anything stupid like 1234567 or 3333333, or any of the 8 million numbers I've had to memorize in a functional member of American society. And don't write it down on a Post-it note and stick it to your monitor!

It was the highlight of my day. Hey, it's a Wednesday. The bar isn't set   very high.

I have an envelope at home from the long-term disability company. I talked to the LTD lady on the phone a couple of weeks ago, and she warned me it was coming. It's another many-page form explaining why I think I'm disabled, and why I don't think I'll be getting better anytime soon. I haven't opened it. I'm having trouble getting excited about going through all this one more time.

OK, she says (pulling up socks). One more time...

20 October 2009

Don't Get Around Much Anymore

Scarecrow and I went to the UW volleyball game last Friday night. They beat UCLA, 3-1. We didn't go to the game on Saturday, but they beat USC (yessssss!) 3-2. They had a little more trouble with USC than generally expected, but I guess if the team that was supposed to win always won, they wouldn't have to play the game, would they?

It was nice to get out, for a change. I don't remember how long it's been since I went someplace besides the place Scarecrow works, or a doctor's office. I usually mean to go along when Scarecrow runs errands on the weekend, just for a change of scenery, but when the time rolls around I've either run out of energy, or I'm apprehensive about being able to negotiate heavy traffic in my chair without inflicting fatalities. Or I start thinking about how, if you're sitting down in a crowd, all you see are butts, and most of them aren't really all that attractive.

So it was nice to get out. Kind of overwhelming, in a way. Lots of noise (although I could have chosen something less crazy than a Pac-10 volleyball game), lots of color, lots of stuff to look at. Lots of fun.

There's a home game against Stanford in a couple of weeks. I'm in! I may even get crazy, and go to the grocery store this weekend. Or the library. Or Costco... No. Wait. Scratch that....

16 October 2009

MS Story -- Years 17 - whenever

Picking up where I left off:

In spring 2004 my hands were numb, but even two years after the exacerbation that took them out they still seemed to be improving at a rate so gradual I wondered if it wasn't just wishful thinking. So, maybe still getting better. At least, not getting worse.

As we began to get the occasional "sun break" (a weather phenomenon apparently unique to the Pacific Northwest), a friend from work and I started going for a walk at lunch. One otherwise unremarkable day, we were coming back from an otherwise unremarkable walk when my right knee began hyperextending every time I put weight on it. Made for a very awkward gait. I glumphed back to my office. After sitting for a bit, I was OK again.

That was the top of the ski jump. Walking gradually, steadily got harder and harder. At first the problem only cropped up when I tried to walk a significant distance. I started carrying a very cool hiking stick, one with which I had hiked many pre-impairment miles, in case I had trouble getting back where I started. On one memorably humiliating occasion I was crossing a busy intersection near the office with a couple of coworkers when I lost my balance and fell. It took both of them to get my sorry butt out of the street. Can't like it.

At some point along in here, I started having real problems with fatigue. Any physical activity was just such hard work. The harder I tried, the stiffer I got. Life as isometrics.

I tried Betaseron. After every shot, I felt pretty much like crap up to about four hours before it was time for the next shot. And it wasn't making any difference. The neurologist suggested, in the nicest possible way, that it might have been more effective and had fewer side effects if I had started it earlier. Maybe so. At this point, saying I may have brought this on myself may -- or may not -- be true, but it's not particularly helpful.

I tried Novantrone. The side effects weren't too bad, the bright blue urine was kind of cool, but you've got to wonder about a drug the nurse has to wear a hazmat suit in order to administer. And it wasn't making any difference.

I tried Tysabri. No help there, either.

After a while, even standing up became an adventure. I'd be standing there, minding my own business, not doing anything in particular, and suddenly realize "Oh shit. I'm falling again." Scarecrow and Tuffy learned that a sudden loud crash no longer meant the dogs were doing something inadvisable. Now it was at least equally likely they'd need to haul me up off the floor. And repair whatever I broke on my way down.

I went from hiking stick, to forearm crutches, to a manual wheelchair with a power scooter for longer distances.

That worked as long as I could still move my hands and arms. My hands were numb, but I could still use them. Kind of. I was already so clumsy that I really don't remember when the sensory problem also became a mobility problem. Whenever it started, progression was gradual but steady. Two years ago I finally gave in to the physical therapist, who had been trying for years to get me into a power chair. Which is another whole story in itself -- one for another time.

And that's where I'm at. I can't stand or walk, I have very limited use of my arms, not much use of my hands. Fatigue is a problem. I think my cognitive processes are about the same as they ever were, which may not be saying a great deal.

So, OK. That's my MS story. Can I go back to something fun now?

Although I'm not much of a fan of spectator sports, I like Pac-10 volleyball. We might go to the UW game tonight. They're playing UCLA. It should be a good game. I'm a UCLA alum and Tuffy goes to UW, so I don't really care who wins. Or maybe we'll go tomorrow night, when they play USC. I always like to see somebody beat USC. And I'm looking forward to spending some quality time this weekend with a stack of library books. I'm part way through Narrow Dog to Carcassonne by Terry Darlington. Jim the whippet -- the narrow dog in the title -- is clearly Bareit's alter ego.

14 October 2009

MS Story -- Years 15 - 16

Picking up where I left off, by the spring of 2002 I had had MS for at least 14 years without anything much in the way of exacerbations and no real ongoing symptoms. I had the occasional transitory sensory weirdness -- part of my tongue would seem a little bit numb, or a patch on my right forearm would feel sunburnt (in winter? in Seattle?). When I described the tongue thing to my dentist, he looked at me like I'd grown two heads. After that, I referred to these little things as my "stupid symptom of the week", and tended to keep them to myself.

Then, over the course of a couple-three weeks, I went numb from about the waist up. I could move my arms and hands just fine, I just couldn't feel anything. I couldn't tell if my fist was open or closed unless I was looking at it. Let me tell you, washing your hair is a very strange experience if you can't feel either your hands or the back of your head. Picking things up was awkward, writing with a pen or pencil was a joke, and using a keyboard was totally in the can.

I did a three day hit of steroids, which tasted yucky and turned my face red, but had no other noticeable effect.

The numbness partially remitted at a steady but glacial rate over the next two years, with no new exacerbations. I talked to the neurologist about starting one of the disease-modifying drugs, but decided not to at that point. (Not a decision made lightly, but a topic for another time.) I could use a pencil, kind of; I could use the keyboard, kind of; I could play music as well as I ever did, which is not saying a great deal. I found it hard to memorize new music, but I always did. I could still understand the bizarre things the programmers told me their software was doing. I'm not sure what that says about my cognitive processes, but it kept food on the table.

So I'm 16 years into this thing, and my hands are kind of numb. It's more disabling than you'd think, but still, not too bad, considering.

13 October 2009

MS Story -- Years 0 - 14

Since the first thing I do when I stumble across a new MS blog is go looking for their MS back story, it only seems fair that I reciprocate by putting up my own. Here it is.

In fall of 1988, I noticed that my vision in one eye was kind of not-right, like I was looking through a piece of unevenly smoked glass. Not bad, just curious. Since I hadn't had my eyes checked in forever I went to see an opthalmologist. Dr. Mordis. No shit. Med school must've been hell for this guy. Anyway, I got the usual routine, and something I've since learned is a visual field test. He says I've got optic neuritis, which means "something wrong with the optic nerve." They don't know what causes it, he says, but it usually goes away on its own. Good enough for me. It did, so I didn't give it another thought.

For seven years.

In 1995 we arrived in Seattle after driving from Lansing, Michigan. I walked the dogs, grabbed a book, and headed for the hotel hot tub, but after a few minutes I was having trouble seeing the print. Weird. It was just like that time I had optic neuritis. After I got out and cooled off it went away, so I didn't give it another thought. (Yeah, I know. I know now. I didn't know then.)

In fall of 1996, I went to an oral surgeon to have some wisdom teeth removed. The pre-op questionnaire asked about history of neurological weirdness, so I checked optic neuritis. The surgeon asked when it had last occurred. I told him I had it right then. Since it was barely noticeable and would go away on its own, I hadn't thought to do anything about it. He suggested I have it checked out. In the hope that a neurologist would provide me with an excuse not to yank my wisdom teeth, I made an appointment.

I also, finally, googled "optic neuritis." Imagine my amazement, confusion, and dismay to find it generally buried in a discussion of multiple sclerosis. WTF?

I remember going home and working on Tuffy's halloween costume. Aladdin was big that year, and she dressed up as Jasmine. It was grab-the-insulin cute.

What with appointments with a neurologist, an ophthalmologist, scheduling an MRI, and back to the neurologist again, it was spring of 1997 before I finally got a diagnosis. The neurologist said it was "a textbook case of MS", whatever that is. And he saw no reason not to have the wisdom teeth out.

And that was pretty much it, up to the spring of 2002. Two incidents that I hesitate to call exacerbations, because they were barely noticeable. No disease-modifying drugs -- I don't think they were even in clinical trials at the beginning of the story. The first 14 years were a piece of cake. If the first 10 years is predictive of the course your MS will take, I'm lookin' good.

12 October 2009

The Person I Used to Be

When I'm perusing all the amazing MS-related blogs out there, I find I always want to start with the posts that tell me who this person is, and how they came to be the way they are.

Well, fair enough.

But before I go through the whole MS thing, let's start with where I was before. Not who I was, so much, because I think I'm still pretty much the same person. But what I used to do, when I could do stuff.

The thing I had to give up most recently was work. I did that in June. Even though I enjoyed my day job and was good at it, giving it up didn't leave me wondering who I was the way I did when I stopped being a zoologist and left academia 25 years ago. I worked as a tech writer, but that didn't define who I was.

I used to breed and show English and Gordon setters.



Giving that up was hard, but keeping long-coated dogs meant spending several hours every weekend grooming, and I got to where I couldn't stand up long enough to get it done. An ungroomed setter starts out looking something like an unmade bed, and they go downhill from there.




Too bad. Maggie was a great editor.


Rachel was my canine alter-ego.

















I used to dance -- contra, southern squares, Morris, clogging. It's how I met Scarecrow, and I miss not being able to do it anymore.

I used to play music. I'm not a musician by any means. To borrow a phrase from a character in a book I just read, "If I can do it, it's not art." Music was more of a social activity; a bunch of people would get together and play old-timey music. It's something Scarecrow and I used to do together, he being the far more ept musician than I, and I miss it.

I used to sew, and quilt.

I used to do calligraphy. Not art (see above), but fun.

Those are all things I used to do. They're part of the person I used to be, in a way that my day job never was. In addition to being a way to spend my time, each of those activities came with a circle of friends who did the same thing. They are friends that I've drifted away from, and I miss them more than anything.

09 October 2009

The Taste of Plaster Dust

Insulation... sheetrock... mud... plaster dust everywhere. Progress is being made, albeit at a glacial rate, on our remodeling project.

We leave in the morning before the crew shows up, and they're usually gone by the time we get home in the afternoon. We wander through the house, looking for signs of activity by the construction fairies. Kind of like an Easter egg hunt only, you know, not. To be fair, it probably would've gone a lot faster if we had moved out of the house during construction. If we had known of accessible, dog-friendly housing we might have done that, but the prospect of finding such a thing was daunting, and living someplace else for however long it took would've been expensive. The contractor was willing to work around us, so if it takes a little longer, we're good with that.

So far, she says, knocking firmly on wooden skull, we got lucky with the paint colors we picked. My previous attempts involving anything other than boring off-white have been unmitigated disasters, so I was uneasy about venturing further out on the color palette. And greens are tricky. I was looking for that soft, sagey green, somewhere between, and perilously close to, toothpaste and pond slime. The wrong brown can be similarly unfortunate, but even the burlap-brown in the bathroom looks good. This is where it gets scary. I'm starting to think we could put something other than off-white in the living room, and not live to regret it. And in theory, it seems like you should be able to choose the color of your own bedroom. In practice, I wonder if it makes any difference that Tuffy's favorite color is purple.

07 October 2009

More Pet Therapy

It doesn't seem fair to introduce one of our live-in pet therapy specialists without introducing the other.


Ernie is an 11 1/2-year-old retired racing greyhound. His registered name is MBJ's Profit, and in his youth he raced (briefly) in Colorado and Arizona. As near as I can tell he never finished better than a distant third, so perhaps "MBJ's Not For Profit" would have been a better fit.

We got Ernie when he was about three, from Greyhound Pets, Inc. We adopted our first Greyhound from this group in 1999 and have volunteered with them ever since. We've had four other greyhounds, and one long-term foster. Why yes, greyhounds do indeed make great pets, thanks for asking. GAS (Greyhound Accumulation Syndrome) can be a real problem when you're working with retired racers.

I'm trying to think of something to say about Ernie. Just saying he's perfect doesn't make him sound very interesting. He's just such an easy-going, ho-dee-do guy. He even puts up with Bareit, and that's asking a lot. (Really, aside from Bareit's fondness for sharing a dog bed, they're pretty good buddies. We call them the dog unit.)

He does have one characteristic I suppose you could consider a shortcoming. As smart as he is (and he is very smart indeed), he doesn't seem to have the neurological wiring to learn not to eat food that's left within his reach when nobody is looking. You can always tell. A greyhound that has just consumed an entire loaf of bread looks something like an anaconda that has just swallowed a goat. He can't help it. He's a fat dog stuck in a skinny dog's body.

I can relate.

06 October 2009

Why Am I Doing This?

After I set up this blog, it took me three years to come up with something I thought would be worth writing about.

I didn't want to collect educational information about MS. It's been done very well, by people who put a lot more effort and energy into it than I ever would.

I didn't want to scare people. Most people with MS are relapsing-remitting. They have to deal with a whole mess of scary stuff, but between relapses don't have significant residual disability. Three years ago I was already secondary progressive, with a somewhat different set of issues. Not everyone with MS will wind up where I am.

I don't have any enlightening insights into life with MS, or a particularly literate way of putting my experience into words, even if I were convinced it was worth putting into words, which I'm not.

Besides, after 20-some years of writing to pay the bills, I'm dogged by the Samuel Johnson quote, "No man but a blockhead ever wrote, except for money." Writing is work, kids, not something one does for fun. I gotta have a reason.

So, OK. I finally retire from my day job. I'm about to do whatever it takes to make the transition from being employed to being retired on disability. From everything I've read, applying for Social Security Disability benefits can be quite the adventure, and approval usually takes a long time. Friends who work for Social Security might be able to explain what's going on. If nothing else, documenting the process will help me keep track of what I did, and when I did it. Maybe by the time my claim is approved, I'll find a different reason to keep doing this.

So I apply for SSDI. Three weeks later, Social Security has approved my claim for benefits. Now, tell me again, why am I doing this? All the reasons I had for not blogging are still valid, and the reason to blog is gone.

Wait...that might be a good enough reason to keep writing, right there. Sheer perversity has always been a powerful motivator for me, and has probably been the force behind most of the pivotal decisions in my life.

Apparently, it still works.

02 October 2009

Another Letter From Social Security

Yesterday afternoon as Scarecrow was going through the mail, between the T-Mobile bill and a Netflix DVD, he mumbled something about "... disability claim approved, blah blah blah..." I assumed he was talking about my claim for short-term disability insurance, since they seem to need reassurance on a weekly basis that I'm still disabled. But no. This is from the Social Security Administration. They approved my claim for disability benefits.

The letter I got a couple of days ago about creating a password for the Social Security web site makes sense now. Unbeknownst to me, the letter  approving my claim, which I didn't expect for several more months, was already in the mail. OK. I get that part.

But wait. Could they really be talking about the claim I filed three weeks ago? Don't expect to hear for several months, they said. Your initial claim is likely to be denied, they said. I know people who have spent years in SSDI hell, trying to get legitimate claims approved. This can't possibly be right. WTF?

If it's true, I guess I'm relieved. If it's true, the long drawn out hassle for which I was braced has become the anticlimax of the millennium. But I find myself waiting for the other shoe to drop. It's never this easy. Is it?

01 October 2009

Pet Therapy

Ever since I stumbled across MS blogdom I've been crawling around MS blogs, totally gobsmacked at the number of knowledgeable, insightful, eloquent, witty people are out there writing about life with MS. But really, it can get to be a bit much after a while, don't you think? I need to write about something else. So.

Introducing one of our live-in therapy dogs: Summit Grin and Bare It (Bareit, to his friends). Bareit is a 2 1/2-year-old whippet. We adopted him in February from his breeder, through a referral from Whippet Rescue and Placement. Lucky for us, he didn't much like dog shows.




He settled seamlessly into our pack (packs have seams? Who knew?), and doesn't seem to mind, or even notice, the pea underneath all those dog beds.

He hasn't (yet) convinced Ernie, our 11 1/2-year-old retired racing greyhound,  that sharing a bed is a good thing -- not for lack of trying.

Tuffy only had a second to snap this picture before Ernie stomped off in a huff, looking for a bed that wasn't infested with whippets. It's not a problem at night, of course, because Bareit is at the foot of our bed, under the covers. Aside from their profound difference of opinion over the bed thing, he and Ernie are really pretty good buddies.

Bareit is Scarecrow's little red and white shadow. He likes to chase a ball, adding many superfluous, high-speed laps of the yard to each retrieve. His favorite game is 'chase me', which he somehow always wins. It's been a while since he destroyed a pair of shoes or a set of ear buds, but I think we're just getting better at keeping them out of his way.




When we get bored, bad things happen.

A Gordon setter breeder I know once described her attachment to her one special heart dog by saying, "He makes me laugh." It's a magical thing. Bareit makes us laugh.

29 September 2009

A Letter From Social Security

The mail yesterday brought a perplexing communication from the Social Security Administration. It has a magic number they tell me I can use to set up a password on the Social Security Administration web site. They tell me not to actually do this until I get the letter approving my benefits, or until I get my first benefit payment. OK fine. Since that's probably still three, or four, or six months away, if they decide to approve my application, I'll set it aside and try not to lose it.

Here's the perplexing part. The magic number is only good until the end of October. Since I applied for benefits September 10, that's less than eight weeks after I submitted my application. What the heck good is a magic number that's only good for eight weeks?

So, whatever. In the unlikely event that they make up their minds in the next month, I'm all set.

28 September 2009

Talking to Myself

Talking to a computer takes a little getting used to.

I started using voice recognition software a couple of years ago, when an occupational therapist told me she used it to dictate her notes. I figured if somebody used it who had the option of not using it, it must be ready for prime time. I could still move my fingers then, but they were really numb. I had never been a hotshot typist anyway and was going downhill from there, so I didn't have a whole lot to lose.

After spending the last couple of years getting used to it, I have to say it's way better than the alternative. My fingers are still mostly numb, and now I can't move them very much, either. That whole keyboard thing is just not workin' for me anymore.

I noticed a pretty gradual transition from using a keyboard except for when I was really tired, to using voice recognition except for when my hands are working particularly well. (In my case, 'working particularly well' means being able to poke keys one at a time with the end of a pencil. I'm not talking 10 fingers, 120 words a minute. Not that I could ever do that anyway.) As my hands got worse, I begin to rely on the software more and more. The more I used it, the better I got at it. Funny how that works.

I'm still mildly incredulous that people who are perfectly capable of using a keyboard would choose to use voice recognition. The people who sell the software say they sell it to doctors and lawyers and such, and I know they couldn't say that if it weren't true, could they? I may have mentioned that although I was never any kind of speed demon at the keyboard, I'm reasonably certain I could get words on a page faster that way. No matter. That train has left the station, so let's start from where we're at.

Voice recognition is better for dictating text than it is for editing or revising. Even though my job title was technical writer, I always spent a lot more time on the job tinkering with existing text or revising a draft than I did coming up with new words. You can use voice recognition for that, but it's just like work. Unless, of course, the alternative is poking keys with the end of a pencil.

Voice recognition is most accurate if you speak clearly. It also helps if you know what you're going to say before you say it. Late in the afternoon, when I'm tired, a little fuzzy, and my voice gets weak, recognition accuracy goes straight in the can. The good news is that I never misspell anything. The bad news is that typos look like typos; everybody knows one when they see it. Recognition errors are totally invisible until you click Send, and they make you look like a total bonehead.

I bet even the doctors and lawyers who use voice recognition for dictation don't use it for moving around a desktop or a webpage. You can use voice recognition for that, too, but I suspect the only people who do are those with a disability that prevents them from using a keyboard or a mouse. Slow and awkward ain't the half of it. If you can still use a keyboard or mouse at all, don't throw them away.

My introduction to voice recognition took place in an office, with a door.  Amazingly, it was only after I retired and began to use voice recognition at home that I realized it's a lot like reading all your correspondence out loud. For an audience. And even if they don't mean to, when I start talking anyone in earshot invariably says:

"What did you say?"
"What?"
"Did you say something?"

I don't blog, IM, or respond to e-mail on weekends, and won't until we get an office with a door.

25 September 2009

Feeling a Little Vulnerable, Are We?



Scarecrow was sick on Wednesday. Staying-home-from-work sick.

It doesn't happen often. He's a pretty healthy guy. It wasn't bad; the usual cold, congestion, sinus-y kind of thing, and he was only out for a day.

Beyond the usual "Oh, poor baby" sympathy, I wasn't worried about him. As I always do when he's sick or otherwise unavailable, I was worried about me. Makes me feel like a self-centered jerk, (well, it makes me admit I really am a self-centered jerk), but there it is. He's my only care provider, 24/7, as we are wont say these days. We've got no backup. If something happens to him, I'm toast. This is not a good situation, and we both know it. He's really tied down. I'm really vulnerable, and I really don't like it.


OK, so why don't I get off my sorry butt and do something about it?

It's not like the situation just came up all of a sudden. The transition from being totally not disabled to needing help with pretty much everything was very gradual. Not much of an excuse, though, when I passed the point at which I need help for pretty much everything long ago.

I get little encouragement from Scarecrow. He says he's fine with things the way they are. That sure wouldn't be the case if I were in his shoes, but that's what he says. Still, we know we need to have a plan that we can implement at a moment's notice if, for some reason, Scarecrow can't take care of me.

Why are we so reluctant to do that?

Part of it is the expense. It comes out of pocket, and $15-$20 an hour  adds up fast. But that's just an excuse. It's like taking a dog to the vet. It's expensive and they hate it, but you just do it. It's not an option. If Scarecrow can't help me, I still need to go to the bathroom. It's not really an option.

The bigger problem is having another person in our house doing this stuff. I don't know why this would seem like such a deal. We've had assorted construction guys in and out of our house every day for the past nine months. And Scarecrow is not your shy and retiring kind of guy -- he's a total party animal. But this would be different. Way different.

Still, whatever it is that's hanging us up about this, we need to grit our teeth and do it. This was a gentle, polite reminder; next time we may not be so lucky. Being vulnerable is bad enough. But being vulnerable and not having a backup plan is just stupid.

22 September 2009

Fall is Here

Although I'm not religious in the conventional sense, I find something to celebrate in the cycle of seasons. This song by Charlie Maguire really captures the feeling of this time of year for me. Here's what he says about it: 

"I meant this song to be more than about a season of the year. It's about living on your own place, being your own boss, being proud of your work, and being aware of all the things that make up your world."

Gotta like that. 

I can't sing it for you -- a fact for which you should be profoundly grateful. (Scarecrow says I have the voice of the true instrumentalist. I'd be hurt, if it wasn't true. And he's no better.) But I wanted to share it anyway.

Fall is Here

When the cows no longer care to go
Out to their pasture far or near
But stand close in the last warm sun
Around the place, I'll know fall is here


And when the corn goes into dent
Across the fields like old men appear
And we pick it and store it all away
Around the place, I'll know that fall is here


When the limbs of the apple and the pear
Lean down with their fruit so near
And my children go a'gathering
Around the place, I'll know that fall is here


And when the hunters come from town
Seeking the pheasant and the deer
With their dogs in front to point the game
Around the place, I'll know that fall is here


And when the hay is in the barn
Stacked to the rafters, tier on tier
Smelling like a summer come and gone
Around the place, I'll know that fall is here


Around the place, I'll know that fall is here
When the evenings come early and the mornings are clear
Over all of the fields that I worked this year
Around the place, I'll know that fall is here

21 September 2009

Must Be Monday

On Saturday morning I realized that Friday was the deadline for my doctors to assure the disability insurance company that I am, in fact, still disabled. If the insurance company doesn't hear otherwise, they say they'll assume I'm going back to work. That would be great, but it ain't happenin'. Of course, I realize this on Saturday morning and can't do anything about it until Monday, so it bugs me all weekend. I really hate it when I do that to myself.

So this morning I call the insurance company and try to make sure they're not going to terminate my short-term disability claim because they haven't heard anything back from my doctors. Exactly what I want to do first thing Monday morning.

Ernie's stitches ripped out again, Tuffy's sick, Scarecrow's on a tear, library books are overdue.

I think I'll take a nap.

18 September 2009

Eight Pages of Details

I got a form in the mail from Social Security yesterday, asking for eight pages of details about my condition, and what I can and can't do. Scarecrow also got a form asking for eight pages of details about my condition, and what I can and can't do. He is supposed to fill his form out based on his own observations -- he's not supposed to ask me what I can and can't do.

Eight pages. I guess I'll stop worrying about whether or not I should have put more detail in my initial application.

Since they sent the forms at the same time to the same address, I wonder if it would cause any consternation if they came back filled out in the same handwriting? Paper forms are kind of a deal for me, because I can't do the whole pencil and paper thing anymore. I thought about asking Scarecrow to scan the form so I could use a graphics editing program put the answers in, and then print it out -- but that  seemed like a lot of bother. I finally just put all my responses in a text file. I'll print it out, stick it on the back of the form, and Scarecrow can write 'see yada yada' wherever appropriate.

Focusing on what I can and can't do is massively depressing, and the process of applying for Social Security disability benefits entails a lot of it. But hey, it's the weekend.

17 September 2009

Howling Before I Was Hurt

Honesty compels me to confess that my earlier rant about the cost of COBRA coverage was based on inaccurate information. The HR lady at work initially told me that the cost of continuing my health insurance coverage under COBRA would be $1200 per month. This was wrong for two reasons
  • I thought it was an all-or-nothing thing -- you could either continue your current coverage, or opt out.
Not so. Leaving my day job of 14 years constitutes a 'qualifying event', so I can choose from any of the options available at the beginning of the plan year. I don't, for example, have to cover Tuffy, who can get better coverage for less money through UW, where she is a student. Too bad I didn't know that last year.
  • The $1200 estimate assumed I would be covering the whole family for medical/dental/vision, which I wasn't doing anyway.
Scarecrow gets pretty decent medical coverage through his employer. He can't cover Tuffy or me, but most companies that size don't offer benefits at all. You take what you can get, and be glad you've got it.

If the HR lady had initially told me that COBRA coverage would be, say, $600/month, I would have gasped and complained and wondered how the heck I was supposed to pay for it on my newly-reduced income. But having softened me up with an estimate of $1200, something on the order of half that almost sounds like a pretty good deal.

It's all relative.

16 September 2009

Virtual Happy Dance

We moved into our new bedroom last night. The remodeling project we started last December has finally produced an accessible bathroom, and a bedroom I can get into without having to calculate the width of the doorway to the nearest angstrom. We're not done yet -- in fact, I guess we're still a couple of months out -- but progress is being made.

We moved here 3 1/2 years ago, from a house about a mile away. In our previous house, there were always stairs between where you were, and where you wanted to be. When I started having trouble getting around, that began to be a problem. It would have been possible to make that house accessible, at great expense, but it would never have been convenient. So we moved here.

This house is on a single level. We knew we'd have to make some modifications. The two concrete steps up to the front door would have to go. Getting in the front door required negotiating a very lumpy threshold and then making an immediate 90° turn to avoid smacking into a wall. Doors were kind of narrow, but that's a relatively easy fix. There was a bizarre 2 foot wide, 6 foot long hallway (we called it the habitrail) between the master bedroom and the door to the master bath. I still have no idea why that was there. But we knew we'd have to tear out the master bath to repair some rot anyway, so what the heck.

When we moved into this house, I could still walk, kind of, using forearm crutches, but I mostly used a wheelchair indoors, a scooter outside. I could still get in and out of the bathtub by myself, although I didn't feel particularly safe doing it, and shower without help. Fortunately we planned the remodel to accommodate someone who was more disabled than I was at the time.

We worked with an architect who is in a wheelchair himself, as a result of a spinal cord injury. His design preferences are somewhat different  from ours, but when it comes to adapting for a disability, he totally gets it. The planning/design process took almost exactly 3 years. We went through several iterations, but I'm glad we did it on paper instead of after we started to build.

So far, we've moved the front door, and built a ramp to it. We have an accessible bathroom, with a wall-hung sink that I can reach, and a roll-in shower. There are pocket doors into the bedroom and bath. There is more to do yet; we need to get the living room reassembled, sheetrock and paint and stuff. Of course, this whole thing cost way more and took way longer than we expected, but we're likin' it. We're likin' it.

14 September 2009

Old Friends, Old Friends

Last week, out of the blue, I heard from an old friend. The sinister people who orchestrate high school reunions -- you know the type -- have been looking through Facebook, tracking down people who were in our high school class. Not that I have any interest in going to a high school reunion; I can't think of anything I'd like to do less. But we were both caught in their net. Jumper and I went to kindergarten together, sometime back in the early 1600s. We were pals through elementary and junior high school, drifted apart in high school, and I hadn't heard from her since. Turns out, for the past 13 years, we've lived about 10 miles from each other.

We spent part of Sunday enjoying a spectacular late summer afternoon in Seattle, trying to catch up on many decades of life happenings. This was enlivened by the dogs' discovery of a huge caterpillar-kind of thing sticking out from underneath the house. I mean huge -- it must've been 6 inches long, maybe an inch in diameter, pale green -- I've never seen anything like it, and the dogs clearly hadn't, either. Ex-biologist that I am, I would've liked to get a closer look at it, but it seemed kind of rude. Scarecrow finally tossed it over the fence. I still wonder what the heck it was. Anyway, Jumper grew up to be exactly the kind of person I would've expected, from the girl I knew. I would have liked her, even if we weren't already friends. I'm looking forward to seeing her again. There are so many things I didn't have time to ask.

Meeting people I haven't seen in a while can be awkward. It's obvious that something is up. I can't stand, or walk, or move my arms, or use my hands. I use a power chair the size of a small subdivision. It's not like you wouldn't notice. If one were to look on the bright side, I suppose it's easy to pick me out of a crowd.

It's hard to suggest something we might do. Meet for lunch? I don't think so. It must be pretty weird, watching someone who has to be fed. My problem, I know, not theirs; but there it is. Meet for drinks?  I dunno. There's something so not-cool about drinking beer, or wine, or single-malt scotch, with a straw. Not that I've ever been any shade of cool, but there it is. Drinks that normally come with straws usually also have skewers of fruit and little paper umbrellas. So not-me.

This is somehow not such a problem with people I'm meeting for the first time. This is who I am, deal with it. It's harder watching people I haven't seen for a while process the fact that I'm not the person they expected me to be. I find myself resorting to the phone (I hate talking on the phone, but at least I sound normal. Well, as normal as I ever did) or the Internet (you can be a dog on the Internet) rather than meeting in person. My problem, I know, not theirs; but there it is.

Still, it was kind of fun talking to a real person, in person. I should think about doing it more often.