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.

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.

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.

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.

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.

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!

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.

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?

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.

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?

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.

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...

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?

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.

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...

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....

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.

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.

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.

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.