The F**kit List

Seems like everybody feels the need to make lists this time of year. The 10 Best ___ in 2012. The 25 Worst ___ in 2012. The 100 Most ___ in 2012. And of course those nasty lists of New Year's resolutions.

A couple of weeks ago, Huffington Post ran a piece called "The F**kit List". This promising title sucked me into one of those self-help, feel-better-about-yourself kind of articles that I never read, just on general principle, but it got me thinking.

What if I kept a list of things I do, or might once have done, or felt I should have done, but have come to suspect are no longer worth the effort? Some are probably things I never should've started doing in the first place. I won't miss doing them, and nobody will notice if I don't. Those are easy. But what about things I used to like to do, and I thought were worthwhile, that now take more effort than they used to? In some cases, much more effort. In other cases, I can no longer do them at all, but still wish I could, or still feel like I should. Which of those should I continue to struggle with, and which should be relegated to my F**kit List?

The first item on my F**kit List: Christmas cards.

Even though I don't celebrate Christmas, the end-of-the-year celebration used to be a really big deal around here. Even before Tuffy was born, there was sewing, shopping, baking, digging out the boxes of decorations and lights and putting them up inside and out; it was a really big deal. I used to like to send cards, lots of cards, made them by hand, included a personal, hand-written note with each one, the whole 9 yards. Crazy.

As it got harder and harder to do, I couldn't bring myself to just scribble a signature on a store-bought card and print out an address label from my meticulously maintained database. I wouldn't include a generic "holiday letter". I wouldn't send out fewer cards. No, apparently if I couldn't do it right, I wouldn't do it at all. 

I don't remember when I last mailed out real physical Christmas cards in envelopes with stamps. It's been long enough that the only ones I get are from my insurance guy and the dentist, whose secretary adds a personal, hand-written note wondering why it's been so long since I've been in for an appointment.

I regret losing touch with the people I only heard from once a year. In some cases they're people I like a lot, but our paths no longer cross on a regular basis. Even if it's only the sketchiest outline, even if it's just knowing they're still living in the same place, I miss hearing what they've been up to the previous year. I liked letting them know that I'd been thinking about them. But you know what? I could no longer do it, and I'm tired of feeling bad about it. So it goes on the F**kit List.

So, to all my blogger buddies: Whatever you celebrate this time of year, celebrate the heck out of it. Although I rarely leave comments on your blogs, it's usually because I can't think of anything useful to say, not because I don't care how things are going with you.

Even if I didn't send a Christmas card.

Gloria's Books and Adult Day Care Center

Yesterday Scarecrow started his new job at Gloria's Books and Adult Day Care Center. It's exactly like his previous job at Bob's Books and Adult Day Care Center, except it's more than twice as far away, in the other direction. Bob even works at the new place. It was just like they never left. Bob even wiped out an entire database, and threw away the backup tapes. Just like a normal day at Bob's Books. (Bob is the sweetest man you could imagine, but he belongs in a home for the technologically impaired.)

Just like the bizarre arrangement we developed at Bob's Books, I went in to work with Scarecrow. He helped me with lunch and bathroom breaks, as necessary. Elsewise, I just tried to stay out of the way.

I'm embarrassed at the lengths to which Gloria has gone to find a spot for me. She had obviously given it a lot of thought, and offered me a couple of choices. Choices! I'm happy to be allowed to sit in a corner, out of the way, and you're giving me choices? After a tour of the facility, we decided I would take up residence in a big empty room waaaaaaaaaaay at the other end of the (really big) warehouse. It's a veritable crip suite, as it's right across from an accessible bathroom, with nobody much else around. I heard a couple of people talking, but didn't see anyone else all day. I certainly don't feel like I'm under foot. There are no feet to be under. Feet under which to be. Whatever. I hooked up to the wireless 'net, and we're good to go. How cool is that?

My new hangout is, as I said, a big room with no windows, a warehouse-high ceiling, and concrete warehouse floor. It's warehouse temperature, which this time of year is still pretty brisk. It feels kind of like a bunker. Gloria brought in a rug for the concrete warehouse floor. Seriously. I can't believe this.

I wish I could still use binoculars. The warehouse backs up to a wetland, and I bet there are some good birds out there.

So, that's it. Who knew there were two book distributors in the greater Seattle area that would let an employee bring a disabled partner to work? Well I guess, as an old friend of mine used to say, 'You don't ask, you don't get.' We're in.

Learning about Lightning

They say lightning never strikes twice in the same place. It makes sense, if you think about it. How much of a place is likely to be left, after it's been hit by lightning?

But me, I don't believe it anymore. Lightning can strike the same place twice. It may not happen very often, but it can happen. I know it can. Because it did.

On April 1, Scarecrow starts a new job that is absolutely amazingly like his old one. Who knew there were two book distributors in the Seattle area that would allow him to bring his disabled partner to work with him every day? It's way the heck the other end of town, so it will be the commute from hell, but how can you complain? Well, I can, of course. I can always complain. I'm really bad that way. But it beats the heck out of not having anything to complain about!

We still have some insurance problems to work out. Smaller problems than we were looking at before, for sure, but anything having to do with health insurance is always a pain in the butt. So there's that. But still.

Timing is everything, isn't it? Our old washing machine, which had been making an ominous clunking sound for some time, finally started smelling funny and filled the utility room with smoke. The new machine has many buttons, and can wash dog beds. Scarecrow likes.

Welcome to Jurassic Park

Whenever I think about using a patient lift, I see the scene in Jurassic Park where they've got a cow in a sling, and they're lowering it into the dinosaur pen.

Some of the adaptations I've had to make to accommodate advancing MS-related disability have been fairly easy for me. Not physically, or financially, necessarily, but emotionally; acknowledging that it was a step I needed to take. Cane? Manual wheelchair? Adaptive driving controls? No problem. Makes life easier. Voice recognition software? Sounds kind of cool. Other adaptations, for reasons that are not entirely clear to me, I fought tooth and nail, long past the point where a reasonable person would've given in. Nothing rational, I just couldn't bring myself to do it. Letting someone help me eat? Sorry, no. Power wheelchair? No. No way. Don't want to go there.

Patient lift?

The rehab medicine guy wrote me a prescription for a lift the first time I saw him, over a year ago. I took it, thought "Yeah, yeah, whatever, I'm not even close to needing this," and stashed it someplace. Last time I saw him, he wrote me another one. As much as I'd like to lose this one too, I need to get real. Before we can realistically expect anyone to provide home care backup or respite for Scarecrow, we need to have a lift.

If Scarecrow and Tuffy hadn't been wrestlers, we would've had to resort to this long ago. They're both strong, fit, and know how to move another person around. Even so, as Scarecrow has had to provide more and more of the muscle power, the antics involved in transfers and getting dressed have evolved from a fairly conventional stand and pivot to a series of bizarre contortions that I can't reasonably expect anyone else to manage. It's getting harder and harder for Scarecrow to do it. It's not safe.

So, the lift. We're there. It's time.

Talk about adding insult to injury, I not only have to accept adaptive equipment I really really really never wanted to use, I have to go through the hellish process involved in procuring durable medical equipment to get it. I'm still trying to get a head array control for my power chair, for criminy sake. Not happy. Not even a little bit. Don't tell me how lucky I am to have insurance that will cover most of the cost. I'm not ready to look on the bright side. I need to be crabby for a little while. Don't tell me it's my fault for having put it off so long. I'm not ready to be reasonable.

Welcome to Jurassic Park.

Of Mice and MS

I usually use voice recognition software to interact with my computer. It's not the easy way to do it, but for me, at this point, it's easier than the alternative. For a while this morning I was stuck using only voice recognition, and was reminded that there are some things it does only awkwardly, and other things I haven't figured out how to do at all without some recourse to keyboard or mouse.

The keyboard part is easy enough. I use an on-screen keyboard program called Click-N-Type, but there are several others, both shareware and commercial, to choose from. The Windows operating system includes a rudimentary version.

OK, so now I'm relying on the mouse to be both the mouse and keyboard. If I could use a conventional mouse, I'd be all set. Of course, it's never that simple, is it?

I haven't been able to use a conventional mouse for years. I tried switching hands, reprogramming button functions, using different shapes and sizes including several trackballs. Using a mouse was somewhere between awkward and impossible. What I really needed was something I could operate by whacking it with my fist.

After limping along with a series of painfully inadequate solutions, I borrowed a Kensington Expert Mouse from the library. (The King County Library System and Washington Assistive Technology Alliance has a bunch of vision, hearing, mobility, and communication tools that they loan out, so you can try them and see how they work for you before you buy them. How cool is that? Have I mentioned that I love this library?)

I don't know why Kensington calls it a mouse when it's obviously a trackball. I guess that's why I'm not in marketing. Although it's not intended for disabled users, it looked like I might be able to operate the trackball with the heel of my hand, and click buttons by whacking them. I didn't want to spend $99 just to try it -- my hopes had been dashed by promising solutions that didn't pan out far too often for that -- but I was sure willing to check one out from the library, free for nothin'. I tried it for a couple of weeks, it worked pretty well for me, so I bought one.

It's not perfect. The two rear buttons are kind of awkward to reach without functional fingers, and the scroll ring is not as useful for me as I had hoped. The buttons aren't effectively as large as they appear, since you have to hit a fairly small area or they don't click. On the other hand, I can use it in ways I hadn't anticipated. Lately I started putting it in my lap, so I don't have to reach for it. Couldn't do that with a mouse.

I don't intend this as an advertisement for this particular mouse/trackball. Everybody has a slightly different set of abilities and limitations; this solution just happens to fit what I can do. Today. Tomorrow I might be back to looking at what's out there, trying to imagine how I might use it to do what I need to do.

I guess my point is that sometimes that works.

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!

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...

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.