Friday, November 30, 2012

Hot and Cold (in caps)

Finally did some real cooking tonight, the sort of thing I used to do nightly. Before The Disease...

Last week, I had picked myself up some hatcho miso. It's not available everywhere, it needs to be made in a specific city in Japan, using a very specific method, if it's to be legitimately called hatcho miso. Similar to the way the name "champagne" can properly be used by wines from a very specific region of France.

It was more strongly flavored than I expected, I had to do some unexpected "fiddlng and diddling," but the flavor came out just great. Chantrelle and oyster mushrooms, plus black cod, were the principle guests at the flavor party; everything worked out just fine. I have some broth left over, my wife says it'll be perfect with scallops... I agree. So, if all goes well, that'll be tomorrow night's dinner.

Also today, I negotiated a dosage change with my herbalist, for the current formula. You know you're living enough in the Eastern world, when you can send a message to the doctor using terminology like "too Cold" and "winter puts my Fire out, Cold formulas make it worse" and he understands you.

It's raining on and off, here in "sunny" southern California. It's very obvious... the plants like rain much better than they like irrigation.

I hope the adjustment to the herbal formula, with additions of yummy treats like hatcho miso broth, will help warm (and Warm) me up enough, so that I can enjoy the gifts that this rainy season wants to give me.

Stay warm and dry, friends.

Thursday, November 29, 2012


The Disease has definitely made a new home for itself in the Stay In Bed phase. This is the first not-just-listening activity that I've done all day... Got up for whatever reson at 5:30AM, took my thyroid pill, went back to sleep until 10AM. Stayed in bed until 1:30, and here it is, 5:00, and I'm finally doing something besides just sitting and listening with my eyes closed.

Sure is a good thing that I'm not in the working world... I wouldn't survive just being in it, much less trying to work in it.

Yesterday, I drove myself to one of my favorite Taiwanese lunch/tea places. Brought said lunch home, and fortunately finished it just before I fell asleeep. Fortunate indeed, because the empty bowl and chopsticks hit the floor, and although I sort-of heard the noise as they hit the ground, they didn't make enough noise to really wake me up, and I didn't see them on the floor until about an hour later.

Meanwhile, another story... and a conundrum, too.

While at said tea/lunch place, my usual "handicapped parking" spot was full. Driving around the lot to find another parking space of any kind, I saw three people around a silver Mercedes, engaged in conversation. There may have been a baby carriage at the side of the car; it may have been schlepping something other than a child, but it was a baby-esque carriage.

What I also saw: No handicap placard. No handicap plate.

I've seen this very car parked in handicap spots before. Same luxurious silver Mercedes, not easy to mistake for another vehicle. Never a placard. No plate. Basically, no state-issued permission to park in such places. At least that I could see, and those things are easy to spot, especially for those of us who have them.

So, here's the conundrum... Is there any point to saying to these people—politely, humanely, no point in raising hackles in your initial communication with people you've never met—that "they can't park there?"

The "handicap-ness" of these spots is very clearly marked. Clear blue lines, clear square wheelchair symbols on the surface of the lot and on abundantly visible signs in front of the very spot that these people were absconding with. There's no getting around what kind of spots they are being profoundly clearly posted. These people just didn't care.

Now, I know that there are sometimes issues with people from other countries having different relationships with/to "authority" than U.S. citizens do... Teachers with students from foreign countries run into this a lot, because in other countries, the teacher is a Tool of the State and good neighbors come together to Put Down The Man so of course they cheat and help each other cheat on tests (and everything else) because that's what good neighbors do, they come together to Put Down The Man. And I do not know what these people's relationships to The Man is, in their home countries, but all I know is they have a Very Expensive Car and I've seen them park several times in this very lot, always Anywhere They Like. And in fairness to our non-native bretheren, this is something that seems to infect Los Angelean drivers, the perception that right-of-way and other laws vary in their application depending on cost of car, as do answers to the question "Don't you know who I am?" It's about privilege, not rule of law; or so it seems, here in L.A.

But to the question: These people have repeatedly shown that They Just Don't Care whether they're "allowed" to park somewhere or not. Is there, any reason to tell them "you're not supposed to park there"? Even phrased specifically to appeal to self-interest—"Dude, that's a three-hundred-plus-dollar ticket if a bored cop wanders through this parking lot. You really don't want to park there."

Or I could call the local constabulary and ask them to send said bored cop through the parking lot to ticket them. Satisfying on paper, I suppose, but I don't know if I'm quite "in that sort of place" yet. Although I may be, if they take the only available handicap spot from me again. I certainly don't mind other disabled people getting to spots before I do, but people taking those spots because they don't feel like "walking that far," or don't feel like parking in "narrow spaces" with their Wonderful Car... that's different. I'm sorry, but that's different.

Then again, having to "walk" (walk-ER) a little further is exercise. So... I should thank them, perhaps?

The Good Book says that rain falls upon the just and the unjust alike. As may be; nonetheless, it doesn't mean that I like having to walk through more of the rain because someone thinks parking spaces should be assigned by cost of car.

The Good Book also says, "Vengeance is mine, saith the Lord: I will repay." Well, if that's what's waiting for them... I don't think their luxurous Mercedes is going to make much difference.

Monday, November 26, 2012

Needles; wheels

A very significant acupuncturing this afternoon. And a small "first" yesterday.

Acupuncturing opened some closed energy pathways. When these pathways get blocked, life stops being worth living. Or even able to be lived... I spent the entire weekend in bed, mostly sleeping, I didn't have enough energy to do more.

This "blockage" was pretty serious... it took twelve needles to fix it, rather than what has alas come to be my "usual" need for just four. All seems to be better now, although it won't be until tomorrow that I'm really fit to deal with the world at all, in anything more involved than "driving back from the doctor's office."

And a small first... I took the "self-propelled" wheelchair out on a "solo" run over the weekend. Shopping. A very simple trip, this particular store is nicely equipped with "drive it yourself" powered chairs (which I've been using for quite some time), but the "solo" was important. Load the chair myself into the truck; unload it from the truck upon arrival, again by myself;  wheel myself into the store, transfer to the power chair. Do the shopping, have small help getting back to the truck from the cashier line (someone pushed the wheelchair behind me in the power chair), but when everything got back to the truck, I loaded the wheelchair all by myself—it was, after all the point of the whole adventure—and then, home again home again, jiggety jog.

Things I noticed (both on the "solo" trip and a separate someone-helping-wheel-me trip):

  1. Chair's weight is just barely on the "doable" side of "almost too heavy to lift myself." Still quite liftable, but barely. My wife and I took it out somewhere together earlier last weekend, and it was actually very much a moment of "sweet togetherness" to lift the chair into the truck together. The doing of which, by the way, with the two of us? Trivially easy.
  2. Man, can I propel myself faster in the wheel-it-yourself chair than with the walker. I walk very, very, very slowly, with the walker.
  3. When you're two people together, one of them pushing you... you definitely want to be pushed in the big-wheel chair rather than the walker/transport chair. The big wheels make going over bumps/divots much easier to manage (both as propulsion and cargo), and no matter how solicitous your "driver" is, if their attention is drawn to something, they just kinda ... leave you wherever you are when their attention is drawn elsewhere. With the self-propelled wheelchair, you can reposition yourself instantly—it might be as simple as spinning yourself around so you're facing another direction, or moving yourself to a more comfortable location. I really like being able to do that. Though my assistants have the patience of saints and are so generous to push me all sorts of places, they can wander off and leave me facing the corner or a wall and you can feel kind of ... abandoned, even though you know that you really haven't been. Big-picture abandoned, at least.

I gotta tell you, though, more than anything else today, I am so grateful for my five-element acupuncturist and today's Twelve Magical Needles. Life is livable again.

Considering where some of today's needles needed to be inserted, you'd never imagine you'd be grateful for such things, but trust me... When you know what it is you've "got" (acupuncturally speaking), you beg to be needled there.

I suppose one of these days I'll be as grateful for M.S. as I am to get needled in CV1 and GV1... I'm definitely not there yet, but you never know. Stranger things have happened (like getting M.S. in the first place), and if you can be grateful for a needle in CV1, you can be grateful for anything.

Thursday, November 22, 2012

Have fun anyway

Survived Thanksgiving. A vegan Thanksgiving. I've had many varieties of Thanksgivings, but this is, I think, my second vegan dinner.

My Medical Team permits (even within the world of "moderation," encourages me) to have meaty treats. Theoretically, I could have turkey meat (depending on how it was prepared), and even the giblets in the stuffing. But the herbalist who put me on the diet of "no, never's" will not bend the rules for dairy. Ever. Ever.

I did get a special dispensation for occasional... occasional... stealth dairy within a hamburger bun. But that's as far as he'll go. And that certainly won't take you very far with a traditional/standard American Thanksgiving meal.

Now, if you think about Your Basic Thanksgiving Dinner, it's a dairy-delivery system, which uses a variety of meats and starches to keep tastes interesting. Martha Stewart's turkey technique involves (at some point) draping a cheesecloth over the bird and basting it with butter, as it bakes. If you're ever using French techniques, you'll definitely monter au buerre to finish a sauce. Besides using cream or creme fraiche in the sauce to begin with, whether you finish with butter or not. Mashed potatoes? The Joel Robuchon "ultimate mashed potato" recipe is basically half and half potato and butter, and my once-a-pastry-chef brother uses sour cream and butter in his mashed potato recipe. Many basic pumpkin pie recipes call for condensed milk. Topped with whipped cream, of course. Or ice cream. Or both. And of course, there's butter in the crust, no matter what kind of pie you're baking. And let's not talk about the dairy content in cheesecake.

You get the idea... When in doubt, throw butter in it. Thanksgiving is not a good day for "no dairy" diets.

Unless, of course, you have a vegan Japanese restaurant nearby.

Table-side service from a tureen is a very French way of serving, but the soup they were serving was definitely vegan. In this case, kabocha (green-skinned Japanese pumpkin, makes a great soup). There's no milk in anything. But it tastes wonderful anyway.

Even the desert is safe. The "ice cream" is ice something, but it ain't "cream."

With hot cranberry sauce poured over the deep-fried rolls at the right of the plate, table-side. Delightfully French-inspired. But 100% non-dairy. Hooray!

The moral of the story is: Limitation doesn't have to be limitation... if you have fun anyway. Something that we who travel the M.S. Highway need to remember...

Have fun anyway.

Wednesday, November 21, 2012

We are...

Not much to report today... not much incurred to warrant reporting. I spent about an hour and a half at The Machine, sending some scores to Someone (more detail when it becomes available), and that was pretty much all I had to offer.

The rest of the day, spent in bed. Underneath two blankets and a spare pillow, and still cold. This "cold" thing is a within-the-last-couple-of-months "new" development; it doesn't matter what sort of temperature the bedroom is (seventies, currently), my legs are always cold. Period. The cat enjoys my sharing the bed with her, but doesn't contribute any warmth, temperature-wise, at least.

And OH yeah, a killer headache. Woke up at 5:30 AM, banged down some aspirin to help assuage said nasty headache... woke up again at 7, because the headache was worse. Horribly worse. Used one of my wife's favorite migraine cures—green Japanese tea, sencha with just a touch of matcha—which took the edge off, and it has about twelve hours later finally subsided. Mostly. Sort of.

Speaking of pills and times, I notice that I'm currently living in a timed-medication world. Thyroid needs to be taken with lots of water on an empty stomach, and given at least a half hour to do whatever, before anything else is eaten/drunk (besides water). And, pharmacist says, you should take it at approximately the same time of day, every day. As best you can, at least. (Same pharmacist said that birth control pills need to be taken precisely the same time every day, one wouldn't want to need them for [you can guess what] but because you took them too late, your need for their help came when they were "between" active times. He reassured me that thyroid wasn't like that, but probably best to take it at least approximately the same time every day.) Latest set of herbs need to be taken immediately before bed. Handful of magnesium, D3, B complex, and a couple of other things, can happen any time, as long as they're clear of the thyroid and the before-bed herbs. My paternal grandfather was a "handful of pills" kinda guy (mostly vitamins but who knows what else), it's bad enough that I think I look like my father in all of my "Robert teaching" photos, now I'm chugging pills like his father. The pill bottle doesn't fall far from the tree, it seems.

And something for my fellow travelers on the M.S. Highway...

Headache and all, this afternoon I happened upon my favorite moment in the Gene Wilder Willy Wonka movie... a lovely moment, something that I needed very much. Wonka is taking the children around the factory, some Bad Little Child is mouthing off, and Willy Wonka turns her face towards him, and says very quietly and earnestly:

We are the music makers, and we are the dreamers of dreams.

And so we are. Headache, neurological nonsense, or whatever... we are the dreamers of dreams.

And I know they weren't talking about what happens when your condition makes you languish in bed all day.

Tuesday, November 20, 2012


A day of discovery. Let's take it from the end of the day and back up to the beginning...

Ended the day at the herbalist's. It looks like an interesting formula, he's actually having me take it in capsules instead of just chugging it (my usual method) so that it'll get dispensed further down the GI tract (no fawning esophagus gonna make off with this formula). It smells nice enough, but herbalist said it would taste just awful, regardless of the smell (rhubarb and cinnamon, among other components), so I'm better off in more ways than one with the pills this time.

While I was there, I made some ... interesting ... discoveries about Life In A Wheelchair. I'm test-driving a self-propelled model, just to see how life with it compares against life with the walker/transport chair. Many things about it are actually quite superior (for one, I can move significantly faster in the self-propelled model, since my walking has gotten so crappy and slow). But the first nasty bit: the men's room was one of those "you need a key" doors, and yanking on the door while sitting in a chair with wheels provides highly educational examples of "equal and opposite reactions" but doesn't get the door opened. Or, if it gets opened, it doesn't open wide enough for you to enter. Haven't figured this one out yet... Being able to walk even a little bit means that I get out of the chair and wall-walk my way into the bathroom, and that works reasonably well enough, but I gotta be honest with you, I'm definitely disinterested in the continuous discovery of "ADA-compatible? Not a @#$#@$ chance!" architectural features. I imagine the architect/builder saying about all sorts of thing "Oh, that'll be fine, really." Well, it won't, and it isn't. So there.

Other discoveries, also wheelchair related... earlier in the day, I realized—finally—what was really my issue with the whole "teacher in a wheelchair" thing, in my final year at the high school. Had nothing to do with the "being stuck in a chair" experience. I just delivered two lectures to national conventions, from a chair. I was able to "connect with" every attendee. Being "stuck in a chair" meant nothing.

But in my final year in the classroom, the classroom was shaped (very roughly) like a triangle, with the screen at the base, the teacher's desk on one side of that base. Now, were I ambulatory, I would have found this a fun challenge. People on the other side of the room kinda losing focus? Walk over to them and engage them more directly. Someone in the back row losing interest? Walk back there, engage them directly. Something on the screen needs emphasis? Walk up to the screen and point at it. Poke at it. It would have been a very enjoyable challenge, using that room, ambulatorily.

Oh yeah, one more thing: It's a computer classroom, which means that every single person there is basically hiding behind a screen. All the more reason to be able to walk around and keep the students from being able to hide behind the screens.

Except when you're stuck in a chair, you're stuck in the chair. You can't move, much or sometimes at all. The most I was able to do was drive the chair to the front of the room under the screen and make the students turn the screens aside so they weren't being blocked from me during the lecture. An interesting challenge, one that I met quite successfully... when I was able to wheel to the center of the screen area and lecture. But if I wasn't doing a "just sit there and listen" lecture, I was stuck in a chair behind a desk: and thereby, for lack of a better word, handicapped.

I know you've all had the experience of "Everyone there thought it was fine, but you knew different, it could have been better; maybe much better." Well, that was the entire year. I really do know that I did a good job—a good job, reaching the students, making a difference in their lives. I was told that my students in classess not my own gave shout-outs to me, because I helped them so very much. In the teacher-evaluation assessments, I received some of the highest scores in the entire faculty. I know I did a good job. I know I did really important, meaningful things for my students. But I felt... handicapped.

And I think that today was the first time I really came to terms with that. Spoke the truth of what I felt, of what that limitation had meant—done—to me.

Or at least I began to come to terms with it... I probably need to do more processing on it. But, at least a very overdue process has finally begun.

You shall know the truth, and the truth shall set you free. (A chorus from the gospel musical Celebrate Life.)  I know Red and Courtney weren't thinking about M.S. when they wrote this, but... it is the truth.

And truth will set you free.

So, my friends... tell the truth. Don't be afraid. Speak the truth about what your condition means to you. What the changes you're experiencing mean. What the loss of what you have lost in those changes really means. How you really feel.

And truth will set you free.

Sunday, November 18, 2012

HUGE weekend

The past weekend was huge for me. Huge. Huge.

Last weekend, I made a presentation at the 55th annual convention of the College Music Society. I've presented for this organization before... I think this is my fourth time total, second time at a national convention. It's at least a little gratifying that I can still do doctoral-level, university-faculty-level, research. Original research, on a subject that's either not discussed or even mentioned in the books about this subject, or what minuscule information that is there just plain wrong in said books, because I was looking at actual, physical evidence that next to nobody knows even exists. This is real research. And doing the research, and presenting it, felt good.

Another surprise: This sort of thing wasn't always appreciated by the unholy machine—The Enterprise—and certain people in positions of authority within said machine, at the place where I used to work. They just didn't "get it." Time was, when I'd be truly hurt and angered by this. Nowadays... I don't really care. I did real work, I did good work. If people whose opinions I don't respect anyway don't understand the level of work I'm doing... I don't care, any more. I don't know whether I'm just in a different kind of denial or have actually gotten over the whole thing, but not carrying around resentment does feel good, for its own sake. The audience at my presentation spent a lot of time very evidently enjoying themselves. And that's good enough.

To celebrate, my wife and I went out to a real Japanese restaurant. Real Japanese. My wife an I were the only English-speakers there. It even looks like something you'd see in Japan...

The bad news... that tiny little aisle was not really wide enough for me to use my walker. The good news... the size of the place made "wall-walking" trivially easy. So, managed to make it to the end-of-the-hall bathroom easily enough.

And boy, was it ever worth it to eat there. Traditional, especially very traditional, Japanese is one of the easiest cuisines for someone on a non-dairy diet to enjoy.

Dang, was  it good.

More surprises... I was actually able to do all the driving—all the driving—myself, in my hand-control truck. The long hours of sitting got a little uncomfortable sometimes, and I did have to take a few minutes just to lie down in the bed of my truck (not to sleep, just to lie down "in neutral" for a few minutes), but the drive was doable. We broke it up... drive an hour, have lunch, drive a couple of hours, we're there; on the way back, drive a couple of hours, pick up some vegan pumpkin pie for the next day (which is amazingly good), drive an hour or so. 

And the love and patience of a beloved spouse makes even the potholes on the M.S. Highway bearable.

My wife did a lot of just-plain-pushing of my walker in transport-chair mode. She got more "cardio" than I did, this trip; well, at least I have lost a lot of weight, I am reasonably easy to transport. But I'm sorry she has to do so much transporting and so much of "together" is such a prisoner of "my fatigue may kick in at any moment" or "my bladder isn't going to accommodate that" or "I can't sit there for that long because it's going to be too uncomfortable" or... Thank God she realizes that when I say "I can't because it'll hurt or something will go south," she knows I'm telling the truth, not just trying to not do things that I'm not interested in doing. I always knew I was lucky to have her as a wife, but I had no idea how lucky until The Disease became an unwelcome guest in our lives together.

Well, what's next? I don't know... I'm still in the "I have to do a lot of lying down" mode, everything—everything—takes much longer than I expect it will, I almost fall down a lot, I have to stop what I'm doing and move to a comfy chair or full-on "hide under the covers" hide in the bed. Will I be able to accomplish anything that I want to accomplish—because I'm not comfortable about moving from "want to" to "plan to," I just can't trust whether I'll be able to do anything, at any given moment, even if last weekend, I somehow was able to... There was a lot of stuff I didn't do in San Diego, like explore the (I was told quite colorful and fun) neighborhood of the hotel, like sit somewhere and look at the ocean; besides make the presentation, I did nothing besides lie in the bed. Sometimes, to sleep. Sometimes, just to lie. I guess I feel good about what I was able to accomplish, but about what I couldn't do... I don't know how I feel. I haven't really settled on "how I feel" about the whole "I can't do [whatever]" issues, and Lord knows I don't know how long the "can't do anything, gotta lie down NOW" is going to continue/recur/whatever...

As always... we'll see.

Wednesday, November 14, 2012

Weight and hope

Some quotidian things that some of my M.S.-accessorized colleagues might appreciate. Or even be able to use.

If you leave your "handicapped" placard on the floor of your car, it doesn't count as "properly displayed," even if you look through the windows at just the right angle and squint just the right way and you can maybe see it underneath the whatever is sorta kinda covering it. (This definitely rates as "Duh," doesn't it?) I found a $333 ticket on my window the other day, for just that reason. Oops... sigh.

But the adventure ended just fine. At the police station (I must also commend the staff there, who were wonderfully kind and helpful ), I showed them the form-that-comes-with-the-placard, it was very clearly my placard not a borrowed one to avoid the fine... and like magic, the fine was reduced to a $25 processing charge. Which I was very happy to pay, given the context. Funnily enough, another fellow was in the station for precisely the same reason with precisely the same problem, so I guess it happens more than we might realize. Or would like to admit. And with luck, I won't "just forget" again. Ever.

One thing the officer helping me added, that's definitely worth sharing with you: He warned me that an all-too-typical ticket is issued to people who park on the "hashmarks," the diagonal blue lines that mark the "no parking" areas that are often next to handicapped spots; areas left to accommodate people who have chair lifters or other equipment to help them get in and out of the car. He says they write tickets all the time for just that... but they don't wave the fine for that. "I just forgot" might work for a missing placard, and they'll accommodate that (at least, this city will), but that doesn't fly for parking on the no-parking hashmarks. Ever.

So... driver beware. Driver be aware. (That'll be good advice for me, too; see above under "duh.")

And the search continues for my New Self-Propelled Wheelchair... I found one today that is too heavy for me to lift into my truck, until I remove the wheels (which is easy to do, and they're nice and light) and the foot rests (which is easy to do, and they're nice and light) and suddenly, the chair is unbelievably easy to hoist. I gotta do a little more shopping, but I think I may have found a solution to the Upcoming Chair Need.

But apparently, there's a price, paid in pain in dealing with the Thrall of the Antichrist—I mean the insurance company. The lighter the wheelchair, the uglier the battle becomes to get the insurance company to cover it. I understand how they might not want to provide carbon mono-filament chairs beloved of Olympic chair racers if all you need to do is get around an art museum and have a companion to push you on occasion, but the case to not use "weighs a @#$#$ing ton" and instead get "light enough for an ordinary human to lift into the trunk of pretty much any car" shouldn't demand a Presidential or papal edict. If those would even work. Apparently not, it would seem... We'll see how it goes.

Hope springs eternal. If it doesn't weigh too much, at least.

Tuesday, November 13, 2012

Amazing day

Just got off the phone with an Unbelievably Nice Person. He was wonderful to talk to, he did me a real solid, but that's not why I'm bringing this up...

"A chance meeting, as we say in Middle Earth," as Gandalf said...

Apparently... his daughter has Our Disease, M.S. Just diagnosed, and quite young, too.

Welcome to adulthood, my dear one, you've got quite the adventure waiting for you...

But it was quite amazing... how something I needed taking care of, and someONE who needed taking care of, connected... simply because he happened to call and I happened to pick up the phone rather than letting the answering machine handle it.

What an amazing day. Already.

"The universe is an amazing place. I wouldn't live anywhere else." G'Kar, Bablyon 5

Monday, November 12, 2012

Oils and attitude

Got another new prescription today.

Cod-liver oil.

Doc says I can have any flavor I want, that orange is very popular, and that a lot of people like cherry.

Worst side effect: Bad taste. Ever tried plain cod-liver oil? I have... GAKK. Sure, I thought, I drink nasty Chinese herbs all the time, I've had to cook turtle shells, mulberry leaves and the bugs that eat them. At the same time. Seven-hole abalone. How hard is cod-liver oil to take?

Trust me. It's nasty. Really nasty. Really really really really nasty.

So, tomorrow, I go looking for palatable fish oil, and also ... wheelchair shopping. My insurance company demands "pre-approval" for wheelchairs, and having looked through the HCPCS codes, there are a lot of different kinds of wheelchairs. So I'm going to check out the wheelchairist, find the chair I want, figure out what the HCPCS code is for that particular chair, and then have my doc send that in to the insurance company.

Where people who have never met me and have no idea what my condition actually is will determine whether I "need" the wheelchair. Because, of course, they know more than my doctor does about what I "need." They don't like paying for what I don't "need," you see.

Perhaps you can tell... I've got a bad attitude about this sort of thing. To put it succinctly...

If there is a Hell...

... it waits for the health-insurance industry.

Saturday, November 10, 2012


A day spent mostly in bed, under the covers.

A few minutes spent in front of Big Computer... I even tried to Accomplish Something. Instantly ran aground, didn't have it in me to do anything to de-aground myself. Gave up, went to bed.

Spent a few minutes in front of laptop computer, doing Small Edits to a presentation I'm scheduled to give at a Big Conference this Friday. Succeeded in Accomplishing Something Small. Then went to bed.

I'm trying to accomplish this, right now... whether it's big or small, I'll not assess at the moment. But I may very well be able to accomplish it.

I hope.

This "not able to accomplish anything" could become quite distressing. Somehow I manage to visit the local Taiwanese tea shop for take-out lunch and tea. A few days ago, I managed to make it to a store that had electric carts for people like me, and stocked up on breakfast cereal and almond milk (which I recommend).

That's pretty much it, accomplishment-wise.

I'm hoping that tomorrow I'll be able to make guacamole. Maybe go off for lunch... maybe. Maybe.

Poke at the presentation, maybe. That doesn't require too much energy.

Maybe... maybe... I'll be able to accomplish something having to do with sound and music. Maybe.

But I don't have much hope.

Well, at least I don't get "attacks." But this Total Loss of the Ability to Sit Up And Do Things...

This sucks.

I took (for whatever reason) a quick look via the computer at the stuff that's going on at the place I used to work. That I would definitely have been involved in.

There was a flash of grief; memory of bygone days, and how much fun it was. But then, I very quickly settled into "It's ok to not be there. Really. It's ok."

Had nothing to do with being stuck in bed. But it's certainly convenient, right now, for it to be ok to not be in the workforce there. Or anywhere, for that matter.

And... as you can guess... it's the only way to close tonight's posting, with Samuel Pepys famous farewell:

And so to bed.

Friday, November 9, 2012

Useless advice

Sorry to have taken so long to share with you, but as you may have gathered from recent postings, my get-up-and-go has got up and went, as they saying so often goes.

Yesterday I caught the last few episodes of Anohana, a short 11-ep anime series currently only available to paid Crunchyroll customers (you can check out the first four for free, if you're interested).

It's really quite heart-wrenchingly beautiful. The characters have known each other since childhood, they grew up together in a Little-Rascals-esque clubhouse-cum-society. They care deeply about each other, some of them love—or would dearly love to love—one another, and to be loved that passionately in return... but there's way more than enough unrequited love to go around. At some point, we (the audience) realize that every single character is in denial about something very significant, doing their best not to confront what they themselves know they need to confront, but oh boy do they ever not want to confront it. Or themselves. Sound familiar?

An amazing article on, "Where is my true path in life," full of noble sentiments like "You also need to be a secret warrior, plotting to take what is yours" and "Inside you is a vital force that is mad with desire to be realized."

Seth Godin's always tought-provoking blog sets forward encouraging words about  "Getting over ourselves."

A multipunch combination from The Universe, offering me, if not all of us, encouragement and challenging us to act.

And somehow... right now, whether maybe I need to hear all this or not, I don't want to even hear this. I just want to be left alone. Because I'll sit up and think about how I'd like to do something creative even, maybe... and then I have to lie down and go to bed. Perhaps then even to sleep, for a while. Hard to get over yourself if you're being sent to bed and pull the covers over yourself because you're so damned cold.

Anime offers encouragement. Salon offers encouragement. Seth Godin offers encouragement. A lot of other people offer encouragement too, but they use the most useless advice ever offered: "Well, just get over it. You really need to put this behind you."

Well, if I could do it that easily, don't you think I would have done it by now? You think this is FUN??? (Actually, sometimes, in a very twisted way, it is or at least is seen as more pleasant than change... but not now. Hardly, now. Not even a tiny bit, right now.)

A perfect cue to launch into a full-blown rage-filled screed... if I didn't need to go lie down and maybe go back to sleep. Which, if it keeps the screeds down, I supposed is indeed a gift of M.S., but... sigh. Bed.

Saturday, November 3, 2012


Well, we nearly went down the "falling down" road again today, but this time, feet on a carpeted floor. Plenty of traction. Which is why almost falling was such a surprise. Yes, I was trying to close a skylight, and yes I had both hands on the crank-pole and neither hand on any support, but c'mon, I've been closing that skylight for freakin' years, and falling down hasn't happened yet. Yet. Well, whatever tomorrow may bring... not today.

Made it to two stores today, one to get a favorite breakfast cereal, one which also houses the closest pharmacy (time to pick up another set o' pills). Forgot to pick up something that has been on my shopping list for nearly two weeks, didn't realize that I'd forgotten to get it until I was on my way back to the car, all shopping already completed. Drat!

And something else raised itself to my awareness, as I was leaving the second store... Damn, do I move slowly. Really, really, really, slowly. I was hardly a sprinter inside grocery stores, but man, I used to be able to just plain walk at nearly race-walker speeds. It's no wonder it feels like it takes forever to do anything... all that time is spent just walking... slowly. So slowly.

Not encouraging. I don't think I'm actively "dis"couraged, but FRAK man, I move so frakkin' slow.

Something else I noticed today... I don't think I actually want to do anything any more. Anything. It's really a nadir of interest in living... I don't think it's an easily fixed acupuncture thing; sometimes I get really dark and depressed, and four needles later everything's just fine! But now, I have to prep a lecture (two weeks away), but I don't really care... I have a web site to set up to provide services for people I've always like helping, no motivation there... I have to clean up some music for a guy who wants to publish my work, I keep forgetting to do that and right now, I have no interest...

I just. Don't. F---ing. Care. At all. I'm not "depressed," that's not how I'd describe it, but even saying "unmotivated" suggests more gumption than I feel. Not UNmotivated, ANTImotivated.

I'm going to make myself a hot dog. Take tonight's herbs. That's about all I've got the gumption to do.

Well, I did manage to write a blog post. I guess that's something. I guess.

Thanks for listening.

Friday, November 2, 2012

Since that's the case...

My, my. Things change; things stay the same.

I hit the ground again yesterday. No damage beyond a bit of a scrape, but dang did it hurt. Causes: No traction on my feet (socks on linoleum) and something in each hand (bottle of ketchup and mayo, nothing heavy or awkward, but it kept me from being able to grab for support). Nice thing about socks is warm feet. Bad thing about socks is no traction. So, until new footies that have as much "I can feel the floor" as socks are provided, I'm going to live sockless. Cold feet, but no hitting the floor. That's what blankets are for, right?

What else? Let's see... The ongoing, repeated, never-ending, exasperating conversations with B-san (Mr. Bladder) are becoming ever more tiresome. Here's a typical "conversation"... B-san screams for attention, foreshadowing fountains that would shame the Bellagio.

I make a mad dash to the nearest bathroom and sit down, hoping to forestall a deluge on a Biblical scale.

Nothing happens.

Me: "Well?"

B-san: "What? You want something?"

Me: "I thought you wanted something. Desperately. Immediately."

B-san: "Why are you wasting my time?"

I give up. I stand up.


I try again. Maybe... maybe... B-san allows a few drops. At most.

Me: "Fine. Whatever. You're done?"

B-san: "What? What's this about?"

Me. "Fine." I give up again. I get up again.


Last week, I explain this to my doctor, and ask him "What am I supposed to do about this? Just hang on for the ride?"

Doctor: "Well, that's what we all have to do, isn't it?"

Well... yeah.

Since that's the case... might as well find the humor in it, eh?