I Shouldn't Be Enjoying This so Much

In June 2009, I finally conceded that MS had kicked my butt, and retired from my day job. I’d heard the stories about people who, when suddenly confronted with so much unstructured time, acquired bad habits. Chewing slippers, recreational barking, peeing in the house, and similar. Having known for several months that the inevitable was not far off, but determined not to succumb to such vices, I’d been preparing a list of things I could do after I retired. Some were things I needed to get done, but had just never managed to finish. Others were things I enjoyed doing, but that my day job didn’t seem to leave time for. All were things I could do from my power chair, no hands required, with no (or minimal) assistance. The list was longer than you’d think, although I can’t tell you what was on it. I didn’t ever refer to it much. I just went looking for it, just now, just for grins, but couldn’t find it (although I got sidetracked, and then got sidetracked from the sidetrack, and so just spent several hours doing things that were totally unrelated to whatever it was I set out to do. This happens a lot.). In the 3 1/2 years since I retired, I’m pretty sure I haven’t checked anything off of that list.

The shameful truth is that I rather enjoy having absolutely nothing to do. Total indolence really suits me.

My mother always said, “You expect to be waited on hand and foot.” Now I am, literally, waited on hand and foot, and although I hate it, I’m afraid I don’t hate it is much as I ought to. I suspect this makes me a bad person, but I’m not sure what I can do about it.

A whole day with no commitments, nothing I have to do, far from inducing apprehension or anxiety, is something I look forward to. A good thing, because most days are like that.

What do I do all day? Good question. I’m not sure. A little of this, a little of that. Whatever I start, it doesn’t take long before I get sidetracked, and then get sidetracked from the sidetrack. Then I look up, and it’s getting dark. Yeah, I know it’s January, and this is Seattle, so that could be right after lunch. But still. What can I say? I’m easily entertained.

Looking at my almost entirely empty calendar, I see nothing until… let's see… Friday.

Perfect.

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.

Signature Required

Scarecrow put our ballots in the mail a couple of days ago. All voting is by mail in Washington state, which is very convenient, although I admit I miss the ritual of going to the polls in person, carving out time before or after work, braving crappy November weather, crossing paths with friends and neighbors, waiting for a little stanchion to open up so I can step up and mark my ballot. With a mail-in ballot, Scarecrow can fill in the circles for me. Voting is easy. The tricky part is signing the outside envelope, to assure the powers that be that the enclosed ballot was submitted by a registered voter.

Yesterday we were notified that the Powers That Be are not too happy with the signature on my envelope.

I understand that. I'm not too happy with it, either. My hands first went numb in spring of 2002, and signing my name has been a problem for me ever since. Some of that time I could do it, kinda; the result just didn't look like my signature. Now I have trouble making a mark on paper, even if Scarecrow shoves a pen into my fist and moves a piece of paper underneath. It does not look like a signature. It does not even look much like an X.

If I ever gave any thought, before I became disabled, to the ways MS could make your life interesting (which, I admit, I never did), not being able to sign my name would not have wound up on my top 10 list. Or my top 25 list. Or probably my top 100 list. I don't think it would've ever occurred to me. But it's a real problem. It surely is.

Really, you wouldn't think it would be that hard. I can't be the first person with this problem. I just need a way for Scarecrow to write my name for me. (He has terrible handwriting, and although mine was never that great, the thought that anyone would take that signature for something I would've written causes me almost physical pain, but I'm willing to cope. That's how far I'd go.) There's the whole power of attorney thing, and making Scarecrow my attorney-in-fact makes sense, but it's kind of scary. It says I can no longer manage my own affairs, when really the thing I can't do is write my name on a piece of paper. It's not that I don't trust Scarecrow to act for me. I do, absolutely. It's just a control thing, I guess.

We're supposed to close on a refi here pretty soon. In case you've never had the pleasure, closing a mortgage loan entails signing your name 8267 times. I'm really looking forward to this.

Might As Well Start Now

If you say you'll laugh about this one day, you might as well start now.

After yesterday, I've been laughing so much my ribs hurt.

It was one of those days. It started out with getting packed up to go into Scarecrow's office at Gloria's Books and Adult Day Care. He has mostly been working from home, which is amazingly wonderful for a number of reasons, but occasionally a little face time is required. As usual, I was going along, to hang out in an empty corner of the warehouse, entertaining myself and generally staying out from underfoot. Since my laptop is what I use to keep myself busy and out of trouble, I was trying to be unobtrusive about watching Scarecrow pack it up, to make sure that the earbuds and microphone and AC adapter and other bits all made it into the bag.

The commute to the other end of town wasn't too bad, all things considered. Even in Seattle, a little rain can do bad things to rush-hour traffic. It was only after we got there that Scarecrow realized that he had left my carefully-packed laptop at home. (Carefully-packed lunch, too, but it is possible to get lunch in Renton, if need be.)

Well, without my laptop, I'm pretty much screwed. Ironically, at one time, a day in a book warehouse would have been my idea of a really good time. Now, although I'm surrounded by books on just about any topic you can imagine and some that you can't, I can't pick them up, can't turn the pages. Screwed.

Not only that. I use the laptop to IM Scarecrow when I need his help; like for a bathroom break. Screwed.

Well, whatever. I can use the time to practice meditation. I've been meaning to do that. Or I can do some serious napping. Whatever. It's only eight or nine hours. No big deal.

So as I pulled into the wheelchair lift to negotiate the 4 feet between the parking level and the warehouse door, I was chatting with Scarecrow, secretly congratulating myself for not going postal over the carefully-packed laptop still sitting next to the front door at home.

"We're not there yet," I said, when the lift stopped halfway up.

Scarecrow pressed the button again. He turned the key off and on, then pressed the button again.

"It's not going," he said. "It's stuck."

He checked to make sure the doors were closed, and the power appeared to be on, and the other obvious stuff. Nothing. It was going just a minute ago. It was working fine. It just stopped.

OK, a couple of minutes ago, when I thought I was screwed? I really wasn't. Now I'm screwed. 

The maintenance guy who takes care of this kind of thing wasn't in yet. I'm sure this was just the kind of thing he was looking forward to on a Monday morning – a medium-sized old lady in a 300 pound power chair stuck in the lift.

I have to say he took it very well, particularly considering that this wasn't the only disaster awaiting him; one of the conveyor belts in the warehouse was stuck, too. After messing with some fuses and circuit breakers and other obvious stuff, he conceded that he had no idea what the problem was with the lift. He called the company that serviced the thing, stressing that with a medium-sized old lady stuck in the lift and it looking like it was about to start raining any minute, this was a problem of some immediacy. They said they'd be there in 10 minutes. Maybe 15.

It probably wasn't any longer than that, but I've got to tell you it feels pretty stupid, being stuck 2 feet up a 4 foot lift, waiting for the rain to start.

The lift guy used a 1 1/8 inch socket with a nice long lever to crank the lift up manually, about an angstrom at a time. Whatever works.

Once we were inside, Scarecrow set me up with a movie on his iPod Touch (have I mentioned that I'm easily entertained?). That was working fine, until a reminder popped up, stopping the movie and taking over the display. And bonging. And bonging. And bonging. And bonging. And bonging. Now, Scarecrow is pretty hard of hearing, and he's got that alarm set so it'll get his attention if the iPod is in his pocket. I was getting it through earbuds. Since I couldn't dismiss the pop-up or take out the earbuds, this went on for 15 minutes, bonging, and bonging, and bonging, until the device finally gave up.

After the bonging stopped I got some time to practice my meditation, or maybe I was taking a nap, when Scarecrow stopped to check in. He dismissed the pop-up, and restarted the movie.

Five minutes later, the reminder popped up again. He had obviously hit Snooze instead of OK. Bong. Bong. Bong. Bong. Bong.

The next time Scarecrow stopped in, he said he was going to talk to Bob (of Bob's Books and Adult Day Care), and then we'd call it a day. Since he was only going to be a few minutes, he packed up the earbuds, set the iPod on the desk, and went off to talk to Bob. Five minutes later, the reminder went off again. Bong. Bong. Bong.  Now I remember – there's no such thing as a short conversation with Bob. Bong. Bong. Bong. By now it's really pretty funny. And as long as it's not going off right my ear, I can laugh.

Might as well start now. I know I'll laugh about this someday.

The little rodent who had built a snug little nest inside the lift machinery, only to find out there was a good reason that nobody lived there? Well, he had the worst kind of bad day.

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.

Sharing the Pain

Many of the websites I visit and the blogs I read are MS-related. Most of the time, I don't find them all that depressing. For one thing, a lot of the time they're not about MS. These people do have lives, after all. But even when they're writing about MS, reading them doesn't usually make me feel depressed. Yeah, having MS is crummy and I'm sorry that anyone has it. I wish I didn't have it myself, truth be told. I don't like reading that anyone's having a flareup or that their symptoms are getting worse. It might make me feel sad, but not depressed. The other day, however, I ran across a blog that I found profoundly depressing.

It's written by a 19-year-old girl who takes care of her mother. The mother has MS, and is apparently pretty seriously disabled. The girl is torn between loving her mother, and hating having to take care of her. It was not easy reading. It left me feeling really depressed.

You see, everything she has to do for her mother, Scarecrow has to do for me, and more. How could he not hate it?

Thinking about it, I realized I mostly avoid reading caregiver blogs. It's so hard for me to put myself in caregiver shoes, to imagine doing that job. I don't know how they do it. It's just too hard, and it never stops. It's easier for me to deal with having MS myself than it is to think about what it does to my family. I have no choice, after all. They could walk away, but they don't.

I've tried to avoid having Tuffy take on caregiver chores, to the point of hurting her feelings sometimes, I think. I don't want her to feel that she has to stay here and take care of me, instead of living her own life. It's a luxury we have because Scarecrow takes care of me instead. If it weren't for him, my daughter might be the angry young woman writing that blog. Hating herself, for hating her mother.

So, there's that. It took a serious dose of old-timey music, a couple of books with absolutely no edifying content, and some really stupid movies to restore my normal grumpy, cynical outlook on life. Sometimes it helps to share pain. Sometimes shared pain just makes more people hurt, and what's the point of that?

Tomorrow is Scarecrow's first day at Gloria's Books and Adult Day Care. The adventure begins…

A Very Ordinary Visit

A couple of people I used to work with came by the house for a visit yesterday. We caught up on jobs and kids and whatever else might've changed, or stayed the same, over the past couple of years. We drank home-roasted coffee, shared some bakery goodies, and yammered for a couple of hours.

The coolest thing about it – the very coolest thing about it – was how ordinary it seemed.

Yeah, I was sitting in my hideous black monster robo-chair, drinking the home-roasted coffee through a straw from a cup in my Doc Ock cupholder. And Scarecrow had to feed me the white chocolate brownie.

But we talked about how the places we used to work weren't the same as they were when we started there. We reviewed, at considerable length, the shortcomings of distressing coworkers. We talked about travel in Africa and South America. (They talked; I listened.) We talked about kids in, and out of, college. We talked about the future of tech writing, or the lack of same.

I don't mind talking about MS or disability or any of that. I wasn't particularly trying to avoid it. There wasn't that "elephant in the room" feeling. At least, I don't think there was. It just didn't come up.

It was really cool.

And the white chocolate brownie was so totally worth it.

You Could Be a Dog on the Internet

There was a piece on NPR the other morning about the difference between your Internet persona and the person you really are. In addition to places like Second Life, where you consciously create an avatar who may or may not be kind of like the real you, there are the tracks you can't help but leave behind in e-mail, IM, blogs, Facebook, Twitter, and all the other kinds of e-communication that people use to form an image of what you must be like.

That got me thinking about what I must seem like to people who only know the e-me. What do you reckon? Dour? Sarcastic? Cynical? Not misleading, I'm afraid. That's the real me. Guilty, guilty, guilty.

I've had people tell me I seem shy. I am, a little, but I don't think that's what they're seeing. It's just that my mom always said, "If you can't say anything nice, don't say anything at all." I frequently don't have anything nice to say. Similarly, I'm frequently rude, although that's not my intention. At least not usually. I'm just oblivious to the finer points of social interaction. I'm not great fun at a party.

So the e-me is pretty much the same as the real me, as unpleasant as that may sound. Or rather, it's the same as the real me used to be. On the Internet, my arms and legs work as well now as they ever did.

Although this blog is all about MS and disability (more than I would like, truth be told), elsewhere on the 'net I probably look pretty normal. Corresponding with people I haven't seen in person since before MS really started to kick my butt, it usually doesn't come up. In most contexts, having MS shouldn't matter. I wouldn't say I'm hiding behind my able-bodied Internet persona, exactly. It just doesn't come up.

As much as I like being able to preserve a part of my life where MS just doesn't come up, it can make meeting people in person kind of awkward.

There is a plan in the works to get together, real life in person, with a couple of people I used to work with. In fact, they were the reason I moved from Michigan to Seattle in 1995. They're both smart, talented, funny, well-read and widely-traveled. They make me feel kind of ignorant and hopelessly provincial. I like them a lot. They have both known I have MS for about as long as I have, but I haven't seen either of them in person for several years. When last we met, I was a lot more capable than I am now. Although we've kept in e-touch from time to time, my physical abilities, or lack of same, just didn't come up.

So when we meet, acknowledging the differences between my Internet persona and the real me will be kind of awkward, but we'll get past it, then Scarecrow will conduct a guided tour of our remodeling project. We'll catch up on the gossip at the places I used to work. Our dogs will convince them that whippets are unmannerly and disrespectful. We'll resolve to meet up again, which may or may not happen. It'll be fun.

Then I'll go back to being the e-me.

Invalid

I am really feeling very sorry for myself. The display on my nearly brand-new laptop went south on Saturday morning. Fortunately everything else still worked, so I could plug into an external monitor. Not easily portable, but better than nothing, especially since I didn't have anywhere I needed to go. Yesterday morning Robert the Computer Tech appeared at Bob's Books and Adult Day Care with a replacement display which was, alas, the wrong one. If the problem were a loose connection somewhere, we were hoping that just putting it back together would fix the problem. No joy. The right part should get here in a couple-three days. In the meantime I could use a dim, fuzzy, flickery old 15-inch CRT monitor that Scarecrow liberated from the file server here. This morning a different computer tech shows up, this time with the correct display. By the time he's finished, the display works, but the webcam doesn't. Of course, we didn't realize the webcam didn't work until after he left. After another seemingly interminable troubleshooting (duh?) session, they're sending another computer tech out tomorrow.

In addition to making me whiny, unpleasant, even downright cranky, this situation has me thinking about how much I rely on a great deal of human, mechanical, and electronic assistance to do pretty much anything. Does that make me an invalid?

Even though I can be, I admit, kind of fussy about words and this is something about which otherwise temperate people can get pretty darned touchy, I mostly don't much care about the word used to describe my current inability to do everything I used to do.

Some people refer to MS as a sickness, an illness, or a disease. I guess it is, but those feel wrong to me. I generally don't feel sick, or ill. And 'diseased' sounds so icky. But the words don't offend me.

A guy I met whose wife has MS was incensed that people would refer to her as 'handicapped', thinking it connoted begging, with cap in hand. Although I don't think that's the derivation of the term, I guess a lot of people share his view, and it's not the politically correct thing to say. I can't get that worked up about it, myself.

I've seen references to people who were 'differently-abled.' While I understand the desire to come up with a term that no one could possibly find offensive, this is just wrong. To me, it implies that these people acquired different abilities to compensate for the normal abilities they don't have. Maybe it's just me, but I sure didn't get any different abilities. Still, if you want to use 'differently-abled', knock yourself out.

At the other end of the PC spectrum, there's 'cripple' or 'crip.' I can refer to myself as being a crip, and frequently do. (When I started this blog I thought about calling it 'Tales from the Crip', but it's been done.) Fellow crips can use the term, in sardonic recognition of our shared predicament. It's ok for my family to call me a crip, because I know they mean it in the nicest possible way. At least I think they do. But it's kind of like the 'n' word; you can only use it if you belong to the club. You gotta draw the line somewhere. But depending on who's using it, I'm OK with crip.

You could talk about an 'impairment' or a 'disability'; either of those is fine with me. I realize that in addition to occupying different places on the spectrum of political correctness, and possibly causing different levels of offense in the population to whom they are applied, the words used to describe physical or cognitive limitations all have slightly different definitions, and different shades of meaning. Pick one that works for you.

The term 'invalid', however, gives me a little trouble. One definition, according to Merriam-Webster, is:

Noun: One who is sickly or disabled
Adjective: suffering from the disease or disability
of, relating to, or suited to one who is sick

OK, I get that. Aside from my previous reservation about being labeled sick, I can't really object to anything here. My problem is that when I hear the word 'invalid', what I hear is 'in-valid.' As in:

Adjective: not valid:
a: being without foundation or force in fact, truth, or law
b: logically inconsequent

Logically inconsequent? I don't think I'm ready to go quite that far. I may be disabled, but I need to think I'm still valid:

1: having legal efficacy or force; especially: executed with the proper legal authority and formalities
2a: well-grounded or justifiable: being at once relevant and meaningful
2b: logically correct
3: appropriate to the end in view: effective

And my favorite, although I admit I don't exactly see the relevance:

4: of a taxon: conforming to accepted principles of sound biological classification

There are lots of words one might use to summarize my particular combination of cans and can'ts, and really, I'm just not that touchy. I know that talking to somebody with a disability can be awkward, and most people mean well.

But invalid? In-valid? I'd rather not go there. Nope. Not me. Not yet.

St. Scarecrow

On the radio this morning I heard a piece about a guy who had an unfortunate encounter with an officer of the law. I wasn't really paying attention so I didn't catch the details. Apparently Bad Things Happened, and the guy got his head slammed into a concrete wall. He is now totally and permanently disabled.

I started listening when they talked about how his wife has to take care of him 24 hours a day. She has to feed him. She sleeps in the same room, because she has to wake up three times every night to turn him so he doesn't get bedsores. She's a saint, they said.

Fortunately the $10 million she gets from the lawsuit will make it possible for her to care for her husband for the rest of his life.

Unfortunately for Scarecrow, I did not have the foresight to acquire a disability that is somebody else's fault. He feeds me, he wakes up three times every night to turn me over, and he does a lot more besides; I will need this help for the rest of my life, and nobody is going to pay him $10 million to do it. Yet it appears he's willing to do it anyway.

He says I would do it for him if our roles were reversed, and while I like to think that's true, I'm not really sure I'm that good a person. He's just a good guy. I wouldn't say he's a saint. He doesn't believe in them anyway. But he's a really good guy.

So, in lieu of $10 million, I thought I should tell him that I love him and I appreciate everything he does for me. Since it seems kind of self-serving to tell him this while he was actually doing something for me, I wanted to wait for a time when he wasn't. The opportune moment, kind of thing. I had to wait a long time. I hadn't realized how much of his time he spends doing things for me.

The beginning of our care partnership was so gradual that I can't remember how it started. He just started helping me do things that were hard for me. Some tasks I did not want help with, no way, no how. (I can sometimes be a little stubborn that way.) He allowed me to struggle, and when I finally gave up and let him help, he never asked why it took me so long. The number of things I resisted assistance with were so few compared to the number of tasks that somehow Scarecrow assumed without my ever realizing it. When someone reads your mind so much of the time, how irritated can you get when they occasionally provide help you don't want?

As Scarecrow started helping with more and more of the things I used to do for myself, we evolved some very complicated procedures that I can't imagine anyone else ever figuring out, and even if they could, I can't imagine anyone but another ex-wrestler being able to perform. Even for $10 million.

I'm glad that woman and her husband were compensated for the injury that was done to him, but nobody's going to pay Scarecrow $10 million to take care of me. I guess he's OK with that.

Use Your Words

For toddlers, using newly-acquired language skills is really hard. Preschool teachers are always reminding kids to "Use your words", instead of using a right roundhouse to express their feelings more directly. Even my relentlessly verbal daughter would sometimes resort to "point and grunt", and, when her rudimentary vocabulary proved frustratingly inadequate, was occasionally reduced to smacking a schoolmate upside the head. (Some things never change. Eighteen years later Tuffy is still relentlessly verbal, and still smacks people upside the head. At least now she does it at the gym.)

On one occasion a teacher broke up a physical altercation between two little boys, telling them to use their words. One of the combatants marched up to the other, got right in his face, and shouted, "WORDS!!!"

My dad tells a story about a long-ago conversation between his older brother and a high school counselor. My uncle did well in science and math, but saw no point in studying English. When the counselor pointed out that mastery of grammar and spelling would make my uncle better able to express himself, my uncle replied, "I ain't never had no trouble expressin' myself." I'm not sure the story is really relevant, but I've always liked it. My uncle was a real jerk.

I've always thought I had a reasonable facility with words. Now that I find myself having to use words and nothing else, I'm learning that it's a lot harder than you'd think.

For example.

One of our regular weekend tasks is clearing off the detritus that accumulates on top of the desk in the office. It's something I used to do myself, because Scarecrow doesn't much care where stuff winds up. Now that I can't shuffle or file papers myself, I need Scarecrow to open envelopes, extract contents, sort stuff into piles to be paid, or filed, or otherwise dealt with, and file the papers that we need to keep. It sounds easy enough. The physical part of manipulating paper isn't something you have to think about. Until you have to do it using your words.

To keep things simple, let's assume I can actually think of the words I want to use, which is not always the case. The routine goes something like this:

"Can I see that? No, the other one... the one on the left. On the left. Put it on my keyboard, so I can see it. The first page. The one on the top. Closer. Not that close. OK, can I see the next page? No, the backside... turn the page over. You can recycle the rest of the stuff. Where did that come from? No, not that... keep the statement, the first two pages. Put it in the pile to be paid. The second pile. Second from the left. Stack it so I can see the balance and the due date. OK, that was easy. Next?"

The only reason it goes as easily as it does is that Scarecrow has developed an uncanny ability to read my mind. If I had to do this chore with anybody else, it would be a lot harder.

Situations that take a whole lot of words to do something really easy come up all the time. You have no idea. They say a picture is worth 1000 words, but I tell you what: when all you've got is the thousand words, just being able to do the point part of "point and grunt" would save me about 10 zillion words a day. And I'm not exaggerating.

Sometimes I just want to whap somebody upside the head.

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.

Calf's Foot Jelly

As a young and impressionable child I remember reading a story in which the main character (Pollyanna?) visited a neighbor with a gift of calf's foot jelly. I remember not knowing what calf's foot jelly might be, but thinking it sounded disgusting. It never occurred to me that I might one day be in a position to be the recipient of such a gift.

Last weekend an old friend and her daughter came by the house for a visit. I think I first met this woman when we were in kindergarten, long ago and far away. We sat next to each other in Mr. Vincent's class in sixth grade. We reconnected last year because of a high school reunion neither of us attended, when we discovered we have lived about 10 miles apart for the past 13 years or so. I've really enjoyed getting reacquainted. Her life and experience has been very different from mine, but we're still interested in a lot of the same things. She's exactly the person I would've expected the girl I once knew to grow up to be. I would've liked her even if we weren't already friends. Her daughter is a kick. We had a beautiful sunny afternoon to sit out on the back deck and catch up.

Which left me thinking about calf's foot jelly. After they left, I finally looked it up. According to Gourmet Britain ("your guide to the best of British gourmet food"), Calf's / Calves Foot Jelly is "a jelly made by making a stock that includes a calf's foot. This naturally sets when cold, and from Norman to Victorian times used to be popular as nourishment for invalids. The Normans considered it as a treat in normal life, flavouring it with pepper and saffron, or perhaps red wine, then decorating it with laurel leaves - then serving it at banquets." They add that "The calf's feet will probably have to be ordered."

I don't feel like an invalid. I'm hardly ever sick (if I could apply my knuckles to my wooden skull, I would be doing it now). Still, it seems like a visit with me must be like making a charitable visit to a sick neighbor, or a frail, elderly relative. Our visitors come in, we sit down, and we talk. If Scarecrow's not busy painting the new siding on the house we might remember to offer something to drink, or brownies if I managed to wheedle Tuffy into making some. That's pretty much it. We don't go any place or do anything. We just talk. I'm sure I find this way more entertaining than somebody who actually has life.

Still, if someone is willing to do this for me, I'm grateful. I try not to pounce on them and talk them to death, although I admit I'm still working on that. it's wonderful to talk to a real live person.

As long as they don't bring calf's foot jelly. I still think it sounds disgusting.

The Done Thing

Being quadriplegic creates some unexpectedly perplexing questions of etiquette. I never anticipated being quadriplegic, of course, but even if I had, I could never have anticipated how awkward it would make the most basic social interactions.

Like shaking hands.

I'm always momentarily horrified when I see someone approaching me with their hand outstretched. I don't want to be unfriendly or rude, but no way can I extend my arm and manage a normal handshake. Even a fist bump is beyond me. My usual response is an awkward smile and a shrug, as I mumble something about how "I can't... ", leaving the other person standing there with their hand stuck out, looking awkward.

I visited the Rehab Medicine Dr. the other day. You've got to figure he sees more than his share of quadriplegics, so he must know what to do in this situation, right? His solution was to walk up, reach into my lap, and shake my fist. It felt kind of... weird... but that's one approach, I guess. I can't really see sticking out my fist as best I can and expecting anyone else to know what to do with it. I wouldn't, if it was me.

That was probably the most interesting thing about the visit with the Rehab Medicine guy. I didn't really expect him to have much to offer, but I guess it's worth checking in from time to time. He's a really nice guy, and he is good about working through my laundry list of symptoms and making suggestions. Mostly he told me to do what I  already know I need to do: arrange for backup/respite care, get a lift, make sure I periodically shift my weight off of proto-pressure sores, change the control on my wheelchair so I can get out of the house. Somehow, hearing someone else say it does not make it seem less overwhelming. I always hope that one of these appointments will just fix everything, and even though I know this is an unreasonable expectation, I'm always mildly disappointed when it doesn't.

Still, the Rehab Medicine guy spent an hour with us ("us" being me and Scarecrow, not the Royal "us") and gave it his best shot. On the way out, he reached in my lap and shook my fist again. It still felt... weird.

Some people, when they realize I'm not going to be able to do anything with their outstretched hand, manage to gracefully resolve the situation by patting me on the shoulder. That's OK. It's actually nice.

Adventures on eBay

If they put s#!t in a can, I swear, my mom would buy it. Every time I venture onto eBay, I realize she's not the only one.

In our ongoing effort to bring the volume of our belongings into closer  correspondence with the available space in our house, I came across a couple of things I will never again use in a million years but which seemed too valuable to throw away. I decided to put them on eBay. Who knows? There are people like my mom out there.

I've been giving desk-drawer space to a K&E Leroy lettering set ever since my brief and unremarkable career as a zoologist, many many many years ago. It was quite the indispensable tool in its day, for preparing technical charts and graphs. It's now totally obsolete, archaic, even, superseded by garden-variety software installed on pretty much any computer. And it wasn't really something you'd want to keep around to do for fun. Really. Trust me on this. So I put it on eBay. Not only was it not the only item of its kind offered for sale, far from it, but somebody actually bought it. Go figure.

Encouraged by my success, I put up my Olympus OM1 SLR 35mm film camera (remember film?) with f1.8 50mm and f5 85-250 zoom lenses, and a bunch of accessories. It was a fun camera in its day, but I can't remember when I last took it out of the case. And really, film? I invested a fair bit of time in creating a listing that would stand out from the surprising (to me) amount of other old Olympus OM Series hardware. With so many people selling this stuff, I can only assume that there are people buying it. Who knew?

There really are people like my mom out there.

In other developments, Ernie's pain meds seem to be helping, thanks for asking. He is moving a little easier and seems to be resting better.

The ARNP in my family practitioner's office filled out the latest Attending  Physician Statement for the long-term disability insurance company, declaring that as much as I wish it were otherwise I am, in fact, still disabled. Since we will apparently need to do this every 6 to 9 months for the next 10 years, she cleverly saved a copy so it will be a quick and dirty process next time.

The wheelchair guy says a joystick of some sort is really the best option for controlling my power chair. I'm sure he knows what he's talking about, but I'm also sure any joystick-type solution is only going to buy us another couple of months before the Red Queen catches up to us again. And since another joystick modification is not that much less expensive than going with a head control, how about if we just cut to the chase? So, he's going to put together a head control for me to try. We'll see how that goes.

So. It's Friday. And it's a beautiful day. (Guess who was re-watching Fargo the other night.) They say the sun may make a few brief appearances this weekend. For March, in Seattle, that will be a beautiful weekend.

Blogging While Bummed

I try not to wallow in self-pity, but I admit that yesterday afternoon I put my feet in and swished them around a little. I usually don't post to my blog when I'm feeling picked on because, frankly, I usually don't much want to. I didn't really much want to write anything yesterday, either, so I don't know why I did.

It wasn't even self-pity, really; I just felt sad. I knew we wouldn't have Ernie around for much longer, but I felt sad to have it confirmed. I don't have much mobility left in my hands and arms, but I felt sad to acknowledge that I'm losing what little I have. I had been looking forward to seeing some of our greyhound friends last Sunday, and felt sad that I wasn't able to do that.

I've never been a particularly social person. I worked from home for years without ever really missing the interaction with coworkers in the office. Scarecrow has always been the party animal in our family, not me. Even so, I'm feeling a little desperate to get out of the house. As much as I love Scarecrow and Tuffy, when I see anyone else I pounce on them and desperately try to talk them to death. I almost feel like I've forgotten how to have a normal conversation with normal people. I realize this is largely my own darn fault. The prospect of dealing with durable medical equipment providers is offputting, so I kept putting it off. But it's time. I've got a call into the wheelchair guy, and we'll see what he comes up with.

In other news, my Long Term Disability insurance provider needs another statement from my doctor confirming that I'm still disabled. They say the most recent appointment they have information about was last August. I've explained that I last saw the doctor in August, I have no appointments scheduled, and no particular reason to go. My condition hasn't changed (other than to continue to progress). They say my failure to return an Attending Physician Statement by March 30 will "result in closure of this claim." I'm just guessing, here, but if I called today to get a non-emergency appointment with my neurologist, I could probably see her sometime in July. If I was lucky.

We went through this whole thing in October. Are we going to do it every couple of months for the next 10 years?

It never fails. Nothing snaps me out of a blue funk like getting really pissed off!

I just saw a bald eagle fly past my window. Geez, they're big birds!

Timing Is Everything

Those annoying highly-effective people tell us to arrange our schedule so we take on our most demanding tasks at the time of day when we're most capable. That always sounded like a good idea to me. There are tasks that require focus and attention, and those I can do on autopilot. Of course, when I had a day job, I often wound up spending my most effective time of day sitting in a meeting, or working on a task I could do on autopilot, its priority inappropriately elevated by an imminent deadline. Still, ordering my to-do list by the time of day I could most effectively accomplish a particular task always sounded like a really good idea, even if I never actually managed to do it.

These days, the time of day determines not so much whether I can do a task well, but whether I can manage it at all. You'd think I'd get it by now. Things I can do easily (relatively speaking) mid-morning will be difficult or impossible in the late afternoon. If I put something off to later in the day, even if I really really really mean to get to it, it ain't gonna happen.

In the middle of the morning, most days, the pharmaceutical soup that determines my outlook and energy level predictably has me feeling as cheerful and positive as I'm likely to get. My physical function is as good as it's likely to be all day. Living in the moment doesn't seem so bad. Late afternoon of the same day can be a very bad place. I'm probably stiff and surly and everything is way too hard and I'm f&%king tired of this sh!t. This is not a moment in which I want to spend a whole lot of time, thankyouverymuch.

At a good time of the morning on a good day, when I'm full of energy and purpose and everything seems relatively easy, I still put off tasks to the afternoon even though I know, rationally, that when the time comes, I probably won't be able to do them. I just can't seem to not do that.

The closest I can come to adapting to the drastic difference in what I can do between the good part and bad part of the day is to consciously set my status by the best part of the best time of day. I need to take note of a moment during the day when life is good and I can do stuff and I'm glad to be alive. I need to be able to go back to that moment during the part of the day when things can look very dark and it can be hard to remember that life is good and I'm glad to be alive.

This all sounds embarrassingly new-agey, not to mention whiny and self indulgent, and I'm not sure what my point was, if I had one. And Dragon Naturally Speaking just crashed. Twice. So I guess I'm done.

Let This Be a Lesson

When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.

So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.

My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.

I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.

Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.

Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.

The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.

Is That a Question You Really Want to Ask?

There are questions you shouldn't ask unless you're really sure you want to hear the answer. You know the kind I mean:

"How much worse can it be?"

"What else can go wrong?"

"Could this be any more confusing?"

Really. You don't want to know.

As I struggle to keep my power chair from plowing through our newly sheetrocked and painted wall, there are questions I'm tempted to ask my neurologist when next we meet.

What will I still be able to do this time next year?

What will I be capable of next month? Next week?

What is going to happen to me?

That's right up there with, "Do these pants make my butt look big?"

I won't ask, of course. My neurologist is very knowledgeable, but these are questions for which I know she has no answers. And even if she did, I'm pretty sure I wouldn't want to hear them.

"There is no time but the present."
-- Terry Pratchett
-- A Thief of Time

NPR Commentary

There was an interesting commentary on NPR this morning:

To One Of The Lucky Ones, The New Year Means More by Ben Mattlin.

It's not about MS, but it's an interesting perspective from someone living with a progressive neurological disability.