30 August 2010

Enablers Needed

The wheelchair guy has figured out what bits I need to install a head array control on my power chair, and my insurance company has graciously granted the regal okey-dokey. My coinsurance is 20%, and they'll let me pay half now, and half at installation. So we're good, right?

So, yeah. There's that 20%, and 20% of the lift, and 20% of the lung vac... But here's the thing. 20% of a big number can still be a pretty big number. Especially if there are dollar signs attached.

And what is it going to get me? For now, I would be able to drive my monster robo-chair more-or-less safely, and adjust the seat without help. I would be able to get out of the house, without leaving a trail of devastation and chaos in my wake. At least, not all the time. That would be cool. But for how long? We would be throwing a significant chunk of change at a solution for a progressive disease. Another run with the Red Queen. If I knew I would be able to use it for a year, say, it would be easier to commit. For six months? Maybe. For only a month or two of enhanced mobility, it probably wouldn't be worth it. And, of course, there's no way to know.

it's not like I can't think of other things to do with that money besides pouring it down the MS rathole. Assuming that MS always has first priority when allocating family resources just seems wrong to me.

But it would be cool to walk through the park across the street with Scarecrow and the dogs. It would be very cool.

27 August 2010

Balancing Act

Balancing my checkbook is a job I find myself saving for a time when I need to feel like I have control over something. When I can't do anything about anything else, I can balance my checkbook. I can be totally obsessive about chasing down that three cent discrepancy. I can make the numbers line up. This is something I can do.

On my retirement income this is not a task for the faint of heart, mind. Like watching a train wreck, it can really get my heart racing. When I still had my day job, I could be reasonably confident that the balance, when I got to the bottom of the page, would be positive. Now it's somewhat more exciting. The number at the bottom of the page is another thing I can't entirely control, but whatever its value, I can sure as heck make sure the bank thinks it's the same as I do.

I need to balance my checkbook.

23 August 2010

Forever Young

Why don't you ever hear anybody lamenting the fact that middle age is wasted on the middle-aged?

I just finished reading Best Love, Rosie by Nuala O'Faolain, a wonderful Irish writer with the coolest name I've ever heard. It's about a woman trying to figure out middle age. Being about there myself, it got me thinking.

I remember being startled the first time I heard a woman my age refer to herself as middle-aged. Wait... she's the same age I am. If she's middle-aged, that would mean... Really? Middle-aged? Me? How can this be?

I still feel young, which is clearly at odds with reality, and getting odder all the time. People must think of me as old. I've got gray hair, and creaky joints. I'm quadri-frackin'-plegic, for criminy sake. But I still think of myself as young. When does the inside catch up with the outside? Does it ever?

I don't think I'm particularly phobic about the prospect of getting old. I don't agonize over every line and wrinkle. In fact, I can't remember when I last looked in a mirror. I don't dye my hair. I wish I could do a lot of things that I can no longer do, but that's more an MS thing than a getting old thing.

I remember my grandmother saying, in her Yiddish accent, 'I'm getting younger and younger, every day.' I never really knew what she meant by that.

I still don't.

18 August 2010

Letting Go

This is the ad I posted on craigslist:

Vintage Raleigh Alyeska Touring Bike

Classic loaded touring bike, purchased new in 1988. It has been greatly loved, gently ridden, and well cared for. After sitting for a while it needs new tires and general maintenance, but otherwise is in excellent condition. Includes cateye cyclocomputer, two water bottle holders.

Color - Bordeaux/Rose
Frame Size - 21"
Frame - 555 chrome moly double-butted main tubes
Frame/Drop-outs - Forged vertical
Fork - High tensile, forged end, low rider braze-on
Handlebar - Kusuki WPR-B randonneur style
Stem - Kusuki "WIN" AH
Seatpost - Alloy micro-adjust
Crankset - S.R. Triple one-piece forged alloy. Detachable alloy rings 50/45/32 -- 170mm
Freewheel - 14-30 -- 6 speed -- gold
Hubs - Sansin RE-50, large flange alloy. Q.R -- sealed, 36° front, 40° rear
Gearing - 18 speed -- 29 to 96
Front Derailleur - Shimano Z206
Rear Derailleur - Shimano Z505GS
Shifter - Shimano Z408 down tube braze-on
Brakes - Dia-compe 960/161 gum hoods, alloy cantilever
Rims - Araya SP-30 27 x 1 1/4 alloy, 36° front, 40° rear
Tires - 27 x 1 1/4 skin wall
Pedals - S.R. SP 154, alloy quill type
Grips - Grab On foam

There's no point keeping it. It's not like I'm going to be able to ride it anymore, and it doesn't fit Tuffy. But still.

I bought it when I lived in Michigan. Lansing is a great place to ride a bike. In five minutes you're out of town, on country roads. No traffic to speak of. No hills. Of course, you've got to like cornfields. We had plenty of destinations. There was the ice cream store in DeWitt, the Quality Dairy in Mason, the dairy store at MSU, the place in Wacousta that made killer shakes and meatball sandwiches. No wonder I never lost any weight riding that darned bike.

Tuffy went for her first bike ride when she was four months old, riding in a car seat strapped into a Cannondale bike trailer. (She was born in the middle of December; we didn't get decent riding weather until April.) Scarecrow pulled the trailer and I rode behind, watching a little hand or foot appear above the edge of the car seat. Scarecrow was a much stronger rider than I, but that trailer was the great equalizer. Pack it with stuff for a weekend camping trip, and I could keep up, no problem.

Several people have responded to the ad. There are a lot of bicyclists in Seattle, and it's a pretty cool old bike. Somebody will take it.

But I will be sorry to see it go.

12 August 2010

Everybody's an Engineer

I know a lot of engineers. My dad's an engineer. My brother was an auto mechanic, and is now an electrician, so is an engineer in a practical sense. I worked with more software developers than I can remember. Some of my best friends are engineers. (Scarecrow is not an engineer. Might this be significant?) If there is one personality trait that engineers share, it's that they're never happier than when they've got something to build. Whether it's a machine or a software program, tell them, "I need something that will do XYZ...", and they're off.

After my post the other day about trying to find a no-hands beverage holder, I wasn't surprised to find that a lot of people were surprised that there weren't very many off-the-shelf choices available. What surprised me was the number of people who suggested something that might work.

Scarecrow's brother (I'll call him TinMan), was on the phone that very afternoon. TinMan is an engineer, for real. He designs and manufactures large machines. He has a machine shop, and a son who is an engineering student, conveniently home from college for the summer. His son is, as yet, blissfully ignorant of the project his dad has in mind for him. TinMan asked Scarecrow to send photos of my chair, so he could decide how a cupholder might best be attached. They discussed at length the best way to hold a cup. He says he can come up with something better than what I've got.

For as long as I can remember, my mom found the solutions my dad designed and built for household problems to be a seriously mixed blessing. Missile guidance systems are one thing; an indoor clothesline is something entirely else. While they generally performed the task for which they were intended, the execution was frequently not at all what my mom had in mind. Whatever the problem, my dad was always pretty sure that his solution was the best way to solve it. He was not real receptive to what we would call "user input." I thought it was just my dad, but I've since come to believe it's an engineer thing.

When TinMan says he can design and build a better hands-free beverage holder that I've got now, I believe him. He's a talented guy, with a lot of resources at his disposal. And I appreciate the heck out of the fact that he's even interested in having a go at it. And he reads this blog so I can't say anything bad about him even if I wanted to, which I don't. I'll leave him to do his engineer thing, and I won't try to tell him how it should be done. He wouldn't listen anyway. He's an engineer.

He'll come up with something that works better than the yellow plastic baby bottle holder I've got now, for sure. It is, after all, a pretty low bar. As durable medical equipment goes, it wasn't very. It already broke.

11 August 2010

Lost Post

We lost our Internet connection for a while yesterday afternoon. The idiot who lives next door to us was doing some ill-advised excavation in front of his house. He had a contractor out there moving around a bunch of dirt and some really big rocks, and cutting a drain in our shared driveway. It wasn't actually his property he was working on. Part of it is ours, part is a utility easement along the street, and part  belongs to the neighbor on the other side, who was already pretty cranky about this project. I don't know what-all he managed to break, but there were a bunch of utility trucks parked out there and flaggers directing traffic and a bunch of people trying to put everything back together. Since he didn't get a permit, the city is not too happy about this development. This is all going to cost him some serious money. I take some comfort (I think the word is schadenfreude) from the fact that the idiot next door has caused himself a great deal of grief. It couldn't happen to a nicer guy. But in the meantime, our Internet connection was down.

No 'net.

You don't realize how much you expect it to be there, until it's not. No 'net. No e-mail. No phone, since our home phone is VoIP. No IM, which is the way I usually let Scarecrow know I need some help, even if he's just in the next room. We don't have a TV, but no streaming movies from Netflix. I've got some real paper books, and a couple of e-books on my laptop, but no browsing the library online. The Greyhound Pets newsletter is on Google docs, so I can't work on that. I can't balance my checkbook, because I can't get to the bank's webpage. I can't update my blog. Why do I all of a sudden want to update my blog?

So I wrote a blog post, figuring I'd publish it when we got our Internet connection back. I shut my laptop down without saving it, and I forget what I wrote. I'm sure it was brilliant, just brilliant, but now it's gone.

But we've got our Internet connection back. Maybe I'll balance my checkbook.

06 August 2010

Gotta Want It

There have been times in my life when I knew that pursuing a particular course of action would invite ridicule, and test my capacity to endure public humiliation. Sometimes I did it anyway. If I wanted it bad enough.

An example that comes painfully to mind was competing in obedience trials with a Gordon setter. Although Gordons are lovely dogs, people looking for an obedience prospect don't typically choose one, for good reason. It's not that they're stupid. They've just been bred to have, how shall we say?, an independent turn of mind. In consequence, commands are likely to be perceived as suggestions. Instant and unquestioning obedience will never be at the top of their list of priorities. That's just the way they are. I knew that.

On top of this, the individual at the center of this story was a born clown. She was never happier than when she was the center of attention. She loved to make people laugh. You can imagine where this is going, and that's pretty much the way it went. Her interpretation of commands issued when she had the show ring all to herself were amazingly creative and, I admit, pretty darned funny, although it took me a while to appreciate the humor. She collected a devoted gallery of spectators who could be counted on to show up at ringside to see what she would come up with this time. She eventually earned an obedience title, even ranking among the top 10 Gordons in obedience in the nation that year, although it might only have been the top seven or eight, since I'm not sure there were 10 Gordons competing in obedience that year because most people know better than to try this. In the pursuit of this goal, I learned that my capacity for public humiliation is greater than I ever imagined. Gotta want it.

I don't remember when I last could pick up a cup and drink out of it like a normal person. It was that long ago. I'm almost getting used to drinking everything with a straw. Coffee, hot as well as iced. Wine. Beer. Scotch. But a straw only solves part of the problem. A drink with a straw is still no use to me unless it's sitting on a table where I can reach it by bending over (a maneuver of which I suspect Emily Post would never approve), or there's somebody to hold it for me. What I wanted was a way to drink wherever I happened to be, without having to pester anybody for help. Preferably without creating a spectacle, although I can do spectacle, if need be.

I didn't expect it to be that hard. I am not, after all, the first quadriplegic on the planet. I wasn't surprised that the bountiful array of cupholders available for walkers or wheelchairs generally assume the user can extract the cup from the holder and convey it to the user's mouth. Most people can, but that's not what I need. We could rig something with a mic stand and boom, but I was hoping to find something a little more portable. I eventually located only two commercially-available devices that would attach to my chair or a table and hold a drink where I could get to it. Only one looked like it might work for me.

This particular example of assistive technology was intended to clamp onto a stroller or crib and hold a baby bottle, hence the Fisher-Price color scheme. So much for being inconspicuous. There was no choice of color. The plastic clamp is about as sturdy as it appears in the picture, which is to say, not very. It can support maybe 12 ounces of liquid in a lightweight cup. My 16-oz double-wall stainless steel insulated coffee cup with a full load of coffee is definitely not happenin'. It's huge and bright yellow and looks like, well, like a baby bottle holder. But it works. Scarecrow can load it up and go about his business, and I can drink whenever I want. I had forgotten how cool that was. If it makes my ginormous black Robo-monster power chair look even more ridiculous than it did before, Ch. MacTyke's Heartbreaker CD showed me I can deal with worse than that. Way worse than that.

In Patrick's immortal words, "Freedom is always fashionable." You've just gotta want it.