Another good day; the freeways were most merciful, nothing too horribly painful at the acupuncturist's. Poetic-point-name of the day: "Spirit Storehouse." Also got a four-point set, "Sea of Nourishment." There are a lot of "Seas" on various meridians, they all have their charms, and their uses.
Resolved to do some work in the kitchen this evening, and pretty much finished it just fine. Yeah, there were a couple of things I could also have done, but what I did was necessary, and it was good for me to do it.
Came darned close to burning out my legs and falling over and not being able to stand up. But didn't. And that's definitely a triumph.
Herbalist says I have to crank up the dosage on the current formula. Fortunately, the most prominent flavor in this mix, at the current and soon-to-be dosages, is licorice. Chinese licorice used in herbal formulas involves actual twigs, it has little or nothing to do with the "black licorice whip" flavor of Western candy. But, fortunately, it's not at all unpleasant. Prominent, unmistakable, yes—but not unpleasant.
Tomorrow I'm going to do something completely new, out of the house, with a friend of mine. It's gonna involve a video camera, something that I know "on paper" how to use, but am not nearly as comfortable with as sound equipment. Gonna have to edit it, too... that's going to be fun too, I think. I hope. Fortunately, there's no "due date" on that particular project, but the sooner the whole thing's finished, the happier I'll be.
I'm hoping to come to... to embrace... a change, in the way I'm conducting my life. Has nothing to do with The Disease or what my Neurological Nonsense has inflicted on me... it's as much philosophical as anything else. But it's definitely time for a change.
Plus, I've got lectures to prep. And music to write. And, soon, video to edit. And all of those things are just plain fun. And all of them can be done from a seated position. Sometimes even a really comfortable seated position. The weather is tending towards autumn, and there's a gentleness in the air, in the very energy of the world. Who knows... some of this stuff (not the video editing, but certainly the lecture prep) I might even be able to do outside, in the cool of the day or even the evening. And certainly, coming to peace with the season, with the energy of the earth (especially the energy of Earth, five-element-wise; the time of "decrease"), is a very important part of my healing right now.
And "just plain fun" is also something I can definitely use, right now.
Monday, August 27, 2012
Sunday, August 26, 2012
Just one
Still on the "slow progress/no progress" track. Was able to stay up and seated and at the computer for quite a while today, and did a small piece of sound editing for a friend of mine (it was fun), and posted a Facebook "note" (which hardly counts as "valuable" but what I wanted to say was stuck in my head so writing it down got rid of it, pretty much, so it was worth it for that if nothing else). Showered and all that; gonna go out with the wife for a vegan Taiwanese dinner, and if all goes well, stop by a store for morning-breakfast-cereal milk. Did have to take to the bed for a while, but I got up and returned here, for (among other things) this.
Learned the other day that if something has the "O-U" kosher mark, it's non-dairy (gotta keep an eye out for "O-U-D" which is kosher but with dairy), so that'll be something else easier than poring through tiny-print ingredient lists, to help keep me on the lookout for Stealth Dairy. Which is pretty much in everything, alas. Also learned that challah is almost always kosher which means it's almost always non-dairy. Hooray--another bread I can enjoy! Not exactly all-purpose sandwich bread, it's usually pretty soft, but at least I like it and it's on the OK list. A good combination.
Acupuncture tomorrow. We'll see what happens. Recently, I've had a better couple of days post-treatment... it hasn't lasted, but two is better than none.
And I am being reasonably successful in the recent "at least do something" approach. Small changes. Sometimes too small, sometimes too infrequent.
But as a friend of mine who studied the Book of Changes says (that the book showed him), change the small to change the big. Oh, I've been through my share of big changes, especially recently--and I'm still dealing with the "processing" of said changes. But the truth remains, change the small, and that will create the change in the big.
Kind of the "domino" effect: push the first domino over. That's easy, pushing only one domino over.
Sometimes I don't have the energy, the gumption, even the stay-awake-long-enough-to-do-it-ness, to push one domino over.
But one? Even in my current state, one should be doable.
We'll see how well I can keep pushing over just one. Often I surprise myself, more than I expect get pushed over... but one? Should be easy, shouldn't it?
So... just one. Just... one.
I've done more complex things... why do I find "just one" so hard, right now?
Doesn't matter. As Yoda said, "Do, or do not. There is no 'try'." So...
Just one.
Learned the other day that if something has the "O-U" kosher mark, it's non-dairy (gotta keep an eye out for "O-U-D" which is kosher but with dairy), so that'll be something else easier than poring through tiny-print ingredient lists, to help keep me on the lookout for Stealth Dairy. Which is pretty much in everything, alas. Also learned that challah is almost always kosher which means it's almost always non-dairy. Hooray--another bread I can enjoy! Not exactly all-purpose sandwich bread, it's usually pretty soft, but at least I like it and it's on the OK list. A good combination.
Acupuncture tomorrow. We'll see what happens. Recently, I've had a better couple of days post-treatment... it hasn't lasted, but two is better than none.
And I am being reasonably successful in the recent "at least do something" approach. Small changes. Sometimes too small, sometimes too infrequent.
But as a friend of mine who studied the Book of Changes says (that the book showed him), change the small to change the big. Oh, I've been through my share of big changes, especially recently--and I'm still dealing with the "processing" of said changes. But the truth remains, change the small, and that will create the change in the big.
Kind of the "domino" effect: push the first domino over. That's easy, pushing only one domino over.
Sometimes I don't have the energy, the gumption, even the stay-awake-long-enough-to-do-it-ness, to push one domino over.
But one? Even in my current state, one should be doable.
We'll see how well I can keep pushing over just one. Often I surprise myself, more than I expect get pushed over... but one? Should be easy, shouldn't it?
So... just one. Just... one.
I've done more complex things... why do I find "just one" so hard, right now?
Doesn't matter. As Yoda said, "Do, or do not. There is no 'try'." So...
Just one.
Thursday, August 23, 2012
Admit it
Alternating between "I'm sure glad that's over!" and "Well, I guess that's not over with, is it?"
Made it to three different banks today, to take care of business. One of the trips took a little too long because the people I was talking to weren't really With It, but they were nice people anyway.
Made it home, just in time to get a phone call from an administrative judge who returned my call to help clarify the situation and answer a couple of questions I had. A very nice lady. I "get" to go to a hearing next month, but the person I talked to thought it was going to be basically a rubber-stamp and everything will be OK. To make a long story interesting, there are indications that everything is actually taken care of... but not every part of The Machine knows that it is. Once that's cleared, all will be well. Sounds like it's going to be a walkover, if I play my cards right and just play the game. Which, if all concerned are as nice as the judge I spoke to on the phone, will actually be enjoyable.
I'm back to the "spend the night vaguely awake, spend the day sleeping" plan. It was nice, the day or two (well, really only "the day") that was normal and easy-to-stay-awake and not-having-to-dive-for-the-bed. Although I did manage to stay awake to see Brave, an unbelievably sweet movie. Yeah, I know, people have had all sorts of complaints about it, but I didn't care. It was sweet. Lovely soundtrack, too.
Gonna go hit the herbs and pack it in early this evening.
Oh! Wanted to share this with you... I've got a lot of stuff to process (who doesn't?) but I especially do, regarding... well, let's just say, all sorts of stuff. My fellow M.S.ers who find themselves, oh let's use a genteel expression, "separated" from the lives they were comfortable with, for example, ability to work at the job you've had and loved for years... and need to find ways to "process" their separation, here's something that I've found has made a profound difference with me:
Admit what you feel. Don't argue for/against/about it, don't justify it or yourself, don't do anything besides simply admitting what you feel. Just tell the truth.
You'll be surprised where that leads you.
And you'll also be surprised at how much better your feel just getting it off your chest. You don't have to tell a human, nobody besides the Divine needs hear what you say... but you need to say it, because actually saying it means something more than just "thinking" it.
And you may find that simply admitting it, simply admitting what you really feel ... means that you don't have to relive/revisit it.
And on the M.S. Highway, feeling good about anything... feels good, doesn't it?
There's an unusual gift of M.S... being shown how powerful, how necessary it is, simply to tell the truth.
Just admit it. And... most of the battle is already won.
Made it to three different banks today, to take care of business. One of the trips took a little too long because the people I was talking to weren't really With It, but they were nice people anyway.
Made it home, just in time to get a phone call from an administrative judge who returned my call to help clarify the situation and answer a couple of questions I had. A very nice lady. I "get" to go to a hearing next month, but the person I talked to thought it was going to be basically a rubber-stamp and everything will be OK. To make a long story interesting, there are indications that everything is actually taken care of... but not every part of The Machine knows that it is. Once that's cleared, all will be well. Sounds like it's going to be a walkover, if I play my cards right and just play the game. Which, if all concerned are as nice as the judge I spoke to on the phone, will actually be enjoyable.
I'm back to the "spend the night vaguely awake, spend the day sleeping" plan. It was nice, the day or two (well, really only "the day") that was normal and easy-to-stay-awake and not-having-to-dive-for-the-bed. Although I did manage to stay awake to see Brave, an unbelievably sweet movie. Yeah, I know, people have had all sorts of complaints about it, but I didn't care. It was sweet. Lovely soundtrack, too.
Gonna go hit the herbs and pack it in early this evening.
Oh! Wanted to share this with you... I've got a lot of stuff to process (who doesn't?) but I especially do, regarding... well, let's just say, all sorts of stuff. My fellow M.S.ers who find themselves, oh let's use a genteel expression, "separated" from the lives they were comfortable with, for example, ability to work at the job you've had and loved for years... and need to find ways to "process" their separation, here's something that I've found has made a profound difference with me:
Admit what you feel. Don't argue for/against/about it, don't justify it or yourself, don't do anything besides simply admitting what you feel. Just tell the truth.
You'll be surprised where that leads you.
And you'll also be surprised at how much better your feel just getting it off your chest. You don't have to tell a human, nobody besides the Divine needs hear what you say... but you need to say it, because actually saying it means something more than just "thinking" it.
And you may find that simply admitting it, simply admitting what you really feel ... means that you don't have to relive/revisit it.
And on the M.S. Highway, feeling good about anything... feels good, doesn't it?
There's an unusual gift of M.S... being shown how powerful, how necessary it is, simply to tell the truth.
Just admit it. And... most of the battle is already won.
Tuesday, August 21, 2012
Tea time
A good acupuncturing yesterday, accompanied by an at-times "tough love" dharma talk.
And I cross the Great Divide (the 405 freeway) to visit the herbalist, later today. Yum, yum. Well, the last few formulas have been less spit-take-worthy as some of the earlier ones. Ligustrum was in the last formula, which the web tells me is called by us Western folk "privet."
Well, that's fun. It's a hedge. It's a medicine. An amazing world, isn't it?
Things are looking up a little, compared to our last conversation. The last time I submitted something here, just the effort of doing so drove me back to bed. Today, I sat at the computer while I enjoyed my cereal, then I made my wife some tea, then I reconnected my 24" rotate-it-vertically monitor (back from the shop last week, but I had no energy for reconnecting it at the time), then I emptied the dishwasher, and now I'm back at the computer. I've had to tip my head back and close my eyes for a couple of moments, but the "just sitting" isn't debilitating me as much or as quickly (at the moment, at least), and I was able to empty the dishwasher without dropping thing or falling over... both of which nearly happened several times, but didn't! Which I consider a victory.
Something I got from my dharma talk yesterday is simply this: Don't worry about what you're able or not able to do. Just do something; something that matters, something that needs doing, something that only you can do and that you do well. Doesn't matter how monumental it is or isn't. Just accomplish something.
And that feels good. Yesterday, I reclined in the bed, looked over some of my "raw" research materials that I'm using for my November lecture at the College Music Society, and I discovered something that's been on my "WTF is this about?" list for months. Months. A small thing, and yet a big thing.
So that's my plan, for right now. Just accomplish something. Size of "thing accomplished," monumentality of "things accomplished"... "monumentality" being something, I must admit, I've always strived for. Not fame, not renown, not "cashing it in BIG time," but monumentality-of-spiritual-importance, that has always been behind my proudly-worn "overachiever" badge.
Well, right now, monumentality is gonna have to look after itself. That's too big a weight to lift, right now.
But, as the Zen saying goes, when you sit, just sit. The first teaching of chado, the art of the Japanese tea ceremony is "Make the best cup of tea you can." Not the best in the world, not the best that has ever been made in all of recorded and unrecorded history, but the best you can, here and now, with what you have to work with.
Time to make tea. The best cup of tea that I can, with what I have, here and now.
And I cross the Great Divide (the 405 freeway) to visit the herbalist, later today. Yum, yum. Well, the last few formulas have been less spit-take-worthy as some of the earlier ones. Ligustrum was in the last formula, which the web tells me is called by us Western folk "privet."
Well, that's fun. It's a hedge. It's a medicine. An amazing world, isn't it?
Things are looking up a little, compared to our last conversation. The last time I submitted something here, just the effort of doing so drove me back to bed. Today, I sat at the computer while I enjoyed my cereal, then I made my wife some tea, then I reconnected my 24" rotate-it-vertically monitor (back from the shop last week, but I had no energy for reconnecting it at the time), then I emptied the dishwasher, and now I'm back at the computer. I've had to tip my head back and close my eyes for a couple of moments, but the "just sitting" isn't debilitating me as much or as quickly (at the moment, at least), and I was able to empty the dishwasher without dropping thing or falling over... both of which nearly happened several times, but didn't! Which I consider a victory.
Something I got from my dharma talk yesterday is simply this: Don't worry about what you're able or not able to do. Just do something; something that matters, something that needs doing, something that only you can do and that you do well. Doesn't matter how monumental it is or isn't. Just accomplish something.
And that feels good. Yesterday, I reclined in the bed, looked over some of my "raw" research materials that I'm using for my November lecture at the College Music Society, and I discovered something that's been on my "WTF is this about?" list for months. Months. A small thing, and yet a big thing.
So that's my plan, for right now. Just accomplish something. Size of "thing accomplished," monumentality of "things accomplished"... "monumentality" being something, I must admit, I've always strived for. Not fame, not renown, not "cashing it in BIG time," but monumentality-of-spiritual-importance, that has always been behind my proudly-worn "overachiever" badge.
Well, right now, monumentality is gonna have to look after itself. That's too big a weight to lift, right now.
But, as the Zen saying goes, when you sit, just sit. The first teaching of chado, the art of the Japanese tea ceremony is "Make the best cup of tea you can." Not the best in the world, not the best that has ever been made in all of recorded and unrecorded history, but the best you can, here and now, with what you have to work with.
Time to make tea. The best cup of tea that I can, with what I have, here and now.
Saturday, August 18, 2012
Defeat; processing
My, it has been a few days since I checked in, hasn't it? That certainly tells you how much I've been able even to sit up long enough to poke at a computer...
So, I'm still in the "I can't do anything" state. Sitting in the wrong chair and/or the wrong way defeats me. Staying awake during the day defeats me. Pretty much everything defeats me... and by "defeats," I mean "Makes me go to bed and sleep for hours." 'Course, sleeping at night, that ain't happening either, so that defeats me too.
A very spiritually-aligned friend of mine offered this: It's what you need to do right now. Go with it.
Well certainly, there's no "fighting against it." There's not "it" to fight against, for one...
My friend also thought it might be part of the "dealing with the massive changes of the last year" process. And, if so, then there's no way around it... the changes do have to be processed, whether I like them or not.
And if that isn't a lesson living with M.S. teaches you, I don't know what is.
Well, at least I managed to sit up at the computer today. So far. We're going tea-tasting this afternoon, and then probably out for dinner afterwards. That's the plan, at least.
No... that's the hope.
And that's a good place to start.
---An update, that really illustrates my state...
I finished the above around 8:30ish, I think. Actually, I only barely finished it... I posted it, shut the machine down, then lay down and slept until 1 something. Five hours.
I won't be going to tea this afternoon, as planned and discussed above. Maybe... maybe... I'll do something other than sleep, for the rest of today.
But there still is hope. Perhaps not alertness or activity... but hope.
So, I'm still in the "I can't do anything" state. Sitting in the wrong chair and/or the wrong way defeats me. Staying awake during the day defeats me. Pretty much everything defeats me... and by "defeats," I mean "Makes me go to bed and sleep for hours." 'Course, sleeping at night, that ain't happening either, so that defeats me too.
A very spiritually-aligned friend of mine offered this: It's what you need to do right now. Go with it.
Well certainly, there's no "fighting against it." There's not "it" to fight against, for one...
My friend also thought it might be part of the "dealing with the massive changes of the last year" process. And, if so, then there's no way around it... the changes do have to be processed, whether I like them or not.
And if that isn't a lesson living with M.S. teaches you, I don't know what is.
Well, at least I managed to sit up at the computer today. So far. We're going tea-tasting this afternoon, and then probably out for dinner afterwards. That's the plan, at least.
No... that's the hope.
And that's a good place to start.
---An update, that really illustrates my state...
I finished the above around 8:30ish, I think. Actually, I only barely finished it... I posted it, shut the machine down, then lay down and slept until 1 something. Five hours.
I won't be going to tea this afternoon, as planned and discussed above. Maybe... maybe... I'll do something other than sleep, for the rest of today.
But there still is hope. Perhaps not alertness or activity... but hope.
Sunday, August 12, 2012
Not helping
My state has evolved to "bouncing." Instead of being stuck in the bed all day, sort-of-sleeping on and off, and then not sleeping during the night, I do something... at least it's something... and then lie down just for a few minutes (or a half hour, or an hour, but not hours), then get up again. And do at least something. Then lie down a few minutes/half-hour/hour. Lather, rinse, repeat, as the shampoo bottle says.
I think this is an improvement...?
I'd love it to feel like a real improvement, to be enjoyed as a significant improvement, rather than just something remarked as an arithmetic improvement... kinda like "Oh look, I lost an ounce of weight today, that means that I'm losing weight, right? Because I lost something, right?"
The monitor that can be rotated 90 degrees so I can work on "tall" orchestral scores, came back from the repair shop last week. It took me at least five days before I felt strong enough to open the box and reconnect the monitor.
Alas, the part that enables the monitor to stand up on the desk in its rotated position... let's call it "the stand," was not included in the package.
So, they fixed the monitor electronically, and then broke it, possible-to-use wise.
A long stream of obscenities actually is not what instantly came to mind. Just two short sentences:
"That's not right."
And, what I wanted to say to the monitor-repair people:
"You're not helping."
Ah, don't we wish that M.S. actually was an entity with independent existence, that we could yell at? And oh, the things we'd say to it... I'm sure many of what would come to mind involve many, very colorful, and anatomically impossible suggestions, but at the bottom line, aren't the same two sentences exactly what need saying?
"That's not right."
"You're not helping."
Except, the funny thing is... sometimes it is helping... but not in the way we want or expect. I'm not quite in the mental/emotional/spiritual place to "grok" how my current condition constitutes "helping," but ... with luck, perhaps I will.
And hey! I've been hoping/waiting for this monitor for weeks, and I still don't have it, and instead of swearing and throwing things, the first thing I want to say is, "That's not right."
I guess M.S. is helping....
Funny thing, yes?
I think this is an improvement...?
I'd love it to feel like a real improvement, to be enjoyed as a significant improvement, rather than just something remarked as an arithmetic improvement... kinda like "Oh look, I lost an ounce of weight today, that means that I'm losing weight, right? Because I lost something, right?"
The monitor that can be rotated 90 degrees so I can work on "tall" orchestral scores, came back from the repair shop last week. It took me at least five days before I felt strong enough to open the box and reconnect the monitor.
Alas, the part that enables the monitor to stand up on the desk in its rotated position... let's call it "the stand," was not included in the package.
So, they fixed the monitor electronically, and then broke it, possible-to-use wise.
A long stream of obscenities actually is not what instantly came to mind. Just two short sentences:
"That's not right."
And, what I wanted to say to the monitor-repair people:
"You're not helping."
Ah, don't we wish that M.S. actually was an entity with independent existence, that we could yell at? And oh, the things we'd say to it... I'm sure many of what would come to mind involve many, very colorful, and anatomically impossible suggestions, but at the bottom line, aren't the same two sentences exactly what need saying?
"That's not right."
"You're not helping."
Except, the funny thing is... sometimes it is helping... but not in the way we want or expect. I'm not quite in the mental/emotional/spiritual place to "grok" how my current condition constitutes "helping," but ... with luck, perhaps I will.
And hey! I've been hoping/waiting for this monitor for weeks, and I still don't have it, and instead of swearing and throwing things, the first thing I want to say is, "That's not right."
I guess M.S. is helping....
Funny thing, yes?
Friday, August 10, 2012
Slow, gentle changes... for the better, this time. A welcome change, in itself.
Currently, I'm able to get out of bed easily before 10:00. Considering the percentage of time I've been stuck in bed, over the last few weeks, that's actually a huge change.
A friend is in town this week, only for a week... he has been a friend for twenty seven years, I'm very lucky to be able to see him once or twice a year, and I'll be introducing him to the miracle that is properly-brewed oolong, at the local Taiwanese tea emporium. I expect it'll be energetically costly, but that kind of suffering is definitely worth it.... especially if it only needs "spending" once or twice a year.
Some of my friends in our neurological community have shared their experience that the right chair and getting your legs up, rather than dangling, has made a huge difference for them as well, so I'm putting some effort into solving that particular problem in my studio. Not being able simply to sit at the computer to work on music has been one of the major things that has sapped my happiness this summer, and perhaps fixing that will enable me to work--even a little--at the machine; and thus, I hope, to increase my happiness at being able to realize creatively--even a little.
Walking is definitely getting slowly worse; I met some friends at the market last night, I had to sit down in my transport chair/walker twice to talk to them. Yeah, I wanted to talk more than one normally does while shopping, but then again, I hadn't seen them for so long that we needed some catching up... but still, getting "You're weaker than you used to be" messages is never welcome. Especially when you're trying to have quality time with friends.
And we're into Shroedinger's Summer, where I'm definitely Schroedinger's M.S. Patient, 50% happy no matter what the temperature is. Yesterday in L.A. it was high 90's in the air, hotter because of radiance from the asphalt that covers road-happy L.A. So, as I'm walking just from the car to the pharmacy (another "exciting" necessary trip yesterday), above the waist I'm feeling completely horrible; and below the waist, especially my legs, are feeling... just wonderful. If only the heat made my legs work better--it doesn't, alas, but they do like being warmed.
And, I did some good "internal work," just sitting outside at night, listening to The Universe and to how my psyche responded to what it was hearing. I'm sure there are those among us who might say that the doing of such things has nothing to do with M.S., people have been doing things like that for millennia... but the difference M.S. has made for me, in the pursuit of such things is... my excuses for not pursuing such things are being... removed.
A friend of mine's teacher's last words to him were, "Take care of yourself, my son." My own condition is telling me that, now, as well.
The dying and the living are saying the same thing: best I should listen, yes?
Currently, I'm able to get out of bed easily before 10:00. Considering the percentage of time I've been stuck in bed, over the last few weeks, that's actually a huge change.
A friend is in town this week, only for a week... he has been a friend for twenty seven years, I'm very lucky to be able to see him once or twice a year, and I'll be introducing him to the miracle that is properly-brewed oolong, at the local Taiwanese tea emporium. I expect it'll be energetically costly, but that kind of suffering is definitely worth it.... especially if it only needs "spending" once or twice a year.
Some of my friends in our neurological community have shared their experience that the right chair and getting your legs up, rather than dangling, has made a huge difference for them as well, so I'm putting some effort into solving that particular problem in my studio. Not being able simply to sit at the computer to work on music has been one of the major things that has sapped my happiness this summer, and perhaps fixing that will enable me to work--even a little--at the machine; and thus, I hope, to increase my happiness at being able to realize creatively--even a little.
Walking is definitely getting slowly worse; I met some friends at the market last night, I had to sit down in my transport chair/walker twice to talk to them. Yeah, I wanted to talk more than one normally does while shopping, but then again, I hadn't seen them for so long that we needed some catching up... but still, getting "You're weaker than you used to be" messages is never welcome. Especially when you're trying to have quality time with friends.
And we're into Shroedinger's Summer, where I'm definitely Schroedinger's M.S. Patient, 50% happy no matter what the temperature is. Yesterday in L.A. it was high 90's in the air, hotter because of radiance from the asphalt that covers road-happy L.A. So, as I'm walking just from the car to the pharmacy (another "exciting" necessary trip yesterday), above the waist I'm feeling completely horrible; and below the waist, especially my legs, are feeling... just wonderful. If only the heat made my legs work better--it doesn't, alas, but they do like being warmed.
And, I did some good "internal work," just sitting outside at night, listening to The Universe and to how my psyche responded to what it was hearing. I'm sure there are those among us who might say that the doing of such things has nothing to do with M.S., people have been doing things like that for millennia... but the difference M.S. has made for me, in the pursuit of such things is... my excuses for not pursuing such things are being... removed.
A friend of mine's teacher's last words to him were, "Take care of yourself, my son." My own condition is telling me that, now, as well.
The dying and the living are saying the same thing: best I should listen, yes?
Wednesday, August 8, 2012
Administrative challenges/discoveries
I think things were better today. They were certainly more ... interesting.
I didn't find myself fleeing to the bed like I did only a few days ago. Didn't really sleep through the night last night, but at least didn't sleep through the day. I was able to actually be active out of the house and—who'd have thunk it?—actually accomplish things.
I started the day by returning some equipment that a local computer shop had loaned me, and while I was there, I picked up my beloved very-tall monitor, which had been sent to the manufacturer for repairs. Dunno if I'll have the strength to make much use of it any time soon (hope springs eternal), but at least it's home. Who knows, maybe tonight or tomorrow morning I'll be able to extract it from the truck and bring it inside. Dunno about "install" it, but get it inside—at least that's a first step.
And what an ... interesting/amusing-I-guess interaction I had with a state agency today. I'm working on the "disability insurance" road, right now, and that road seems to be rife with potholes and speed-bumps.
A few days ago, I called the number that my taking-care-of-such-things contact at my former employer recommended. Turns out, that was an office in something like Oakland.
I asked my question about how things are screwed up and whether the "screwage" was being removed; they said "Oh no, you don't belong to us, you belong to Pasadena. Go to that office, in person, and talk to them about [the problems] and take [this suggested route] to find resolution."
Fine. Somehow managed to make it down there and into the office; freeway close, actually, and conveniently located right behind the computer shop, so that was a one-stop-shopping trip today. People at that office were very nice. (That was certainly a plus.) Alas, they said "Oh no, this office doesn't do disability, we do employment." I told them the story about how one of their colleagues in Oakland told me specifically to go to that very office... so, now what do I do?
Well, apparently nobody in the office knew anything about such matters, or about disability insurance in general. At all. But they did connect me to someone on the phone who was in some other office (I think in Van Nuys, also vaguely-freeway-close to Pasadena), and even provided an empty cubicle for me to make this call.
Person on the phone explained that the problem I was hoping to solve was, basically, "They never got X form." (To make a long story shorter, the form they 'never got' was the very form that my employer had sent them a month and a half ago. But we continue with the saga...) I explained that the person at my former employer who takes care of such things is famous for taking care of these things promptly in a no-fail manner, and if she says she sent it, she sent it; but that doesn't matter right now, what do I do now to get them the form that's needed? They gave me two fax numbers, both going to the same office, but if you use both (they said), you'll be sure to get it through, apparently sometimes one of the machines goes offline for whatever reason. And call this voice number immediately afterwards to make sure it went through. I leave a phone message with the person at my former employer who takes care of such things, leaving her the directions and telephone numbers.
So I get a call from my ex-employer's facilitator-of-such-things just a few hours later. She said "Oh look, you mean this form that I submitted on June 25 and have a copy proving that I did so? Yeah," she continued, "I just faxed it to the numbers they gave you." Then she called them to confirm receipt... and then...
And then they said "Oh no, you didn't want to sent it to those fax numbers, that'll take more than a week to get seen to. What you really want to do is to send it to this fax number, which is the 'Problem Resolution' line, where it'll get seen to in 24 to 48 hours."
And where, you may ask, is the "Problem Resolution" fax machine?
Wait for it...
Wait for it...
Oakland. Or, at least, somewhere in Northern California... Pretty much where this whole @$#@$ing story started.
Yes indeedy-doo, the people I called first could have told me about the "Problem Resolution" number, and it could have gotten handled in a day or two. But no, it took me more than a week to find my way to the people that everyone else though I needed to send it to, but was not and never was the right place to send it to.
So, a circuitous route to ... success, maybe? We'll see whether it turns out to be real "success" or not. Or whether they're going to want me to go before an arbitrator with hard copies of the form sent two months ago, and proof that a second (unrelated) thing they were complaining about having been long since not just resolved but never a real problem in the first place... another "The form was filled out in a way whoever read it wasn't smart enough to understand, so they tagged it as 'bad' which delayed everything another two weeks."
So, my fellow M.S.ers, besides laughing with me at the humorous pathway this has taken (let's call it humorous; it will be eventually... after all, tragedy+time=comedy), what do I have to share with you that you can take home with you as a souvenir of this adventure?
And really... the people you talk to are probably not the ones who did whatever stupid thing that's karking out whatever you're hoping to get from this organization. You'll probably never talk to the people who actually screwed things up.
And more importantly: As M.S.ers, we know all about the difference between "inconvenient" and truly bad... I can't play the organ any more; I had started playing that instrument professionally when I was 13 years old. I no longer can work at a place where amazing as it sounds, fourteen-year-olds were the best things that happened to me all day. All sorts of biological machinery below my waist is failing. I can barely walk. I can't (at least right now) sit up at a computer to write music. All sorts of things that I was hoping to do, to give manifestation to creativity and music and changing of lives, all those things, at least right now... I. Just. Can't. There are many times when I find all those things, quite soul-crushingly, truly bad.
But the best part of it is... I don't have enough energy to get bent out of shape at bureaucratic functionaries. But I do have enough energy to smile at them. And, even, to laugh.
A gift that keeps on giving. I never expected that M.S. would make it so easy to share kindness, to laugh, and to smile. And to brighten someone's day; a day that, it would seem, nobody ever brightens.
A very, very, interesting gift.
I didn't find myself fleeing to the bed like I did only a few days ago. Didn't really sleep through the night last night, but at least didn't sleep through the day. I was able to actually be active out of the house and—who'd have thunk it?—actually accomplish things.
I started the day by returning some equipment that a local computer shop had loaned me, and while I was there, I picked up my beloved very-tall monitor, which had been sent to the manufacturer for repairs. Dunno if I'll have the strength to make much use of it any time soon (hope springs eternal), but at least it's home. Who knows, maybe tonight or tomorrow morning I'll be able to extract it from the truck and bring it inside. Dunno about "install" it, but get it inside—at least that's a first step.
And what an ... interesting/amusing-I-guess interaction I had with a state agency today. I'm working on the "disability insurance" road, right now, and that road seems to be rife with potholes and speed-bumps.
A few days ago, I called the number that my taking-care-of-such-things contact at my former employer recommended. Turns out, that was an office in something like Oakland.
I asked my question about how things are screwed up and whether the "screwage" was being removed; they said "Oh no, you don't belong to us, you belong to Pasadena. Go to that office, in person, and talk to them about [the problems] and take [this suggested route] to find resolution."
Fine. Somehow managed to make it down there and into the office; freeway close, actually, and conveniently located right behind the computer shop, so that was a one-stop-shopping trip today. People at that office were very nice. (That was certainly a plus.) Alas, they said "Oh no, this office doesn't do disability, we do employment." I told them the story about how one of their colleagues in Oakland told me specifically to go to that very office... so, now what do I do?
Well, apparently nobody in the office knew anything about such matters, or about disability insurance in general. At all. But they did connect me to someone on the phone who was in some other office (I think in Van Nuys, also vaguely-freeway-close to Pasadena), and even provided an empty cubicle for me to make this call.
Person on the phone explained that the problem I was hoping to solve was, basically, "They never got X form." (To make a long story shorter, the form they 'never got' was the very form that my employer had sent them a month and a half ago. But we continue with the saga...) I explained that the person at my former employer who takes care of such things is famous for taking care of these things promptly in a no-fail manner, and if she says she sent it, she sent it; but that doesn't matter right now, what do I do now to get them the form that's needed? They gave me two fax numbers, both going to the same office, but if you use both (they said), you'll be sure to get it through, apparently sometimes one of the machines goes offline for whatever reason. And call this voice number immediately afterwards to make sure it went through. I leave a phone message with the person at my former employer who takes care of such things, leaving her the directions and telephone numbers.
So I get a call from my ex-employer's facilitator-of-such-things just a few hours later. She said "Oh look, you mean this form that I submitted on June 25 and have a copy proving that I did so? Yeah," she continued, "I just faxed it to the numbers they gave you." Then she called them to confirm receipt... and then...
And then they said "Oh no, you didn't want to sent it to those fax numbers, that'll take more than a week to get seen to. What you really want to do is to send it to this fax number, which is the 'Problem Resolution' line, where it'll get seen to in 24 to 48 hours."
And where, you may ask, is the "Problem Resolution" fax machine?
Wait for it...
Wait for it...
Oakland. Or, at least, somewhere in Northern California... Pretty much where this whole @$#@$ing story started.
Yes indeedy-doo, the people I called first could have told me about the "Problem Resolution" number, and it could have gotten handled in a day or two. But no, it took me more than a week to find my way to the people that everyone else though I needed to send it to, but was not and never was the right place to send it to.
So, a circuitous route to ... success, maybe? We'll see whether it turns out to be real "success" or not. Or whether they're going to want me to go before an arbitrator with hard copies of the form sent two months ago, and proof that a second (unrelated) thing they were complaining about having been long since not just resolved but never a real problem in the first place... another "The form was filled out in a way whoever read it wasn't smart enough to understand, so they tagged it as 'bad' which delayed everything another two weeks."
So, my fellow M.S.ers, besides laughing with me at the humorous pathway this has taken (let's call it humorous; it will be eventually... after all, tragedy+time=comedy), what do I have to share with you that you can take home with you as a souvenir of this adventure?
- Keep copies of everything you send The State or The Feds. You'll probably need it, I'm sorry to say.
- Be sure that the message-sending process generates some sort of proof of their receipt of whatever you sent them. "Why yes, your office did in fact receive it on this date, I have this signature and date on the delivery form (if you used confirmation-of-delivery services, which I definitely recommend) or a 'transmission succeeded' from such-and-such a fax number." This may not answer many questions about what/where things went wrong, but if someone says "We never received it," at least you can say "Actually, you did."
- The only question you need to ask is, basically, "How can I help solve this problem? Would you like me to send you another copy of xyz?" If the office is local, tell them, "I can bring it in and deliver it in person to you, would that make things easier?" Lord knows they've gotten more than their share (well, probably exactly the share that they deserved) of "YOU PEOPLE SCREWED THIS UP!!!!" invective, but as Tony Robbins said of anger, "Will making this person 'wrong' make them want to help me?"
- Tell people in the office that they've helped you. If it's at all true, tell them that they gave you precisely the help that you needed. And thank them for it. From the expressions on people's faces when I said that at the Pasadena office, nobody says that to them. Ever.
And really... the people you talk to are probably not the ones who did whatever stupid thing that's karking out whatever you're hoping to get from this organization. You'll probably never talk to the people who actually screwed things up.
And more importantly: As M.S.ers, we know all about the difference between "inconvenient" and truly bad... I can't play the organ any more; I had started playing that instrument professionally when I was 13 years old. I no longer can work at a place where amazing as it sounds, fourteen-year-olds were the best things that happened to me all day. All sorts of biological machinery below my waist is failing. I can barely walk. I can't (at least right now) sit up at a computer to write music. All sorts of things that I was hoping to do, to give manifestation to creativity and music and changing of lives, all those things, at least right now... I. Just. Can't. There are many times when I find all those things, quite soul-crushingly, truly bad.
But the best part of it is... I don't have enough energy to get bent out of shape at bureaucratic functionaries. But I do have enough energy to smile at them. And, even, to laugh.
A gift that keeps on giving. I never expected that M.S. would make it so easy to share kindness, to laugh, and to smile. And to brighten someone's day; a day that, it would seem, nobody ever brightens.
A very, very, interesting gift.
Tuesday, August 7, 2012
Simple (?) prescription
Some experiments, today. Trying to reset my circadian rhythm, among other things.
I did stay in bed until something like 10ish (part of the reason for that was being up for two, maybe three, hours in the middle of the night), but I permitted myself no daytime sleeping. My wife and I went to lunch, then the Avengers movie. I was a little afraid that I wasn't going to be able to deal with sitting up that long, but there were (fortunately) very few people there, so I was able to put my feet up in my transport-chair/walker, and was able to watch the movie in comfort. Huge difference, being able to sit truly comfortably.
Other discomforts presented themselves... I feel no hunger and (to compound that) I have next to no interest in eating much of anything; plus, after I eat whatever amount works out to "too much," I regret having eaten it... anything, really.
I still like drinking tea, I like moderately sweet Taiwanese tea. So, I'm getting hydrated easily. But fed? Frankly, I wonder what would happen if I only ate what I wanted to eat, when I wanted to eat it... which would certainly have nothing even vaguely to do with "normal" meal times or amounts.
So yeah, I still eat things because I think I'm supposed to and/or need to, but if I stopped, I don't think I'd really notice much. If anything.
My acupuncturist said he did something that should really help me to re-engage my heart. To find my passion, as Gordon Ramsay is very insistent about discovering in the chefs he tries to rescue. My herbalist says he keeps adding things specifically for various expressions of creativity and passion.
Well, nothing's working. Not that I can tell, at least.
So... what's the plan, then? I guess... do what I can and what I care about, even if I can't do much or care about less.
Acupuncturist said, "Do things that engage your heart." He said nothing about grandeur, scope. or immensity. Just do something that engages your heart.
A simple prescription... Do something. Something, anything... as long as it engages your heart.
Why is the first thing that comes to mind, That's too much to ask—I'm not going to be able to do anything?
Really, really, I don't need to "rehearse failure." Clearly the first thing that has to change is my consciousness. Yeah, I can't do much, but what I can do, I can do.
And how is that formula different in the non-M.S.-accessorized world?
It isn't. That's precisely what every single person can do... what they can.
Sometimes we laugh at "differently abled" versus "disabled," but that's absolutely true, isn't it? Aren't we all of us "differently" abled?
Well, that's it for the computer, tonight... I'm going to go outside, and sit, and listen.
And really, if living a life with M.S. is drawing me to sit quietly and listen... it's not that bad a life, is it?
And given the current state of affairs in the political "discussions" that abound today...
The ability to just sit and listen marks one immediately as "differently abled."
I did stay in bed until something like 10ish (part of the reason for that was being up for two, maybe three, hours in the middle of the night), but I permitted myself no daytime sleeping. My wife and I went to lunch, then the Avengers movie. I was a little afraid that I wasn't going to be able to deal with sitting up that long, but there were (fortunately) very few people there, so I was able to put my feet up in my transport-chair/walker, and was able to watch the movie in comfort. Huge difference, being able to sit truly comfortably.
Other discomforts presented themselves... I feel no hunger and (to compound that) I have next to no interest in eating much of anything; plus, after I eat whatever amount works out to "too much," I regret having eaten it... anything, really.
I still like drinking tea, I like moderately sweet Taiwanese tea. So, I'm getting hydrated easily. But fed? Frankly, I wonder what would happen if I only ate what I wanted to eat, when I wanted to eat it... which would certainly have nothing even vaguely to do with "normal" meal times or amounts.
So yeah, I still eat things because I think I'm supposed to and/or need to, but if I stopped, I don't think I'd really notice much. If anything.
My acupuncturist said he did something that should really help me to re-engage my heart. To find my passion, as Gordon Ramsay is very insistent about discovering in the chefs he tries to rescue. My herbalist says he keeps adding things specifically for various expressions of creativity and passion.
Well, nothing's working. Not that I can tell, at least.
So... what's the plan, then? I guess... do what I can and what I care about, even if I can't do much or care about less.
Acupuncturist said, "Do things that engage your heart." He said nothing about grandeur, scope. or immensity. Just do something that engages your heart.
A simple prescription... Do something. Something, anything... as long as it engages your heart.
Why is the first thing that comes to mind, That's too much to ask—I'm not going to be able to do anything?
Really, really, I don't need to "rehearse failure." Clearly the first thing that has to change is my consciousness. Yeah, I can't do much, but what I can do, I can do.
And how is that formula different in the non-M.S.-accessorized world?
It isn't. That's precisely what every single person can do... what they can.
Sometimes we laugh at "differently abled" versus "disabled," but that's absolutely true, isn't it? Aren't we all of us "differently" abled?
Well, that's it for the computer, tonight... I'm going to go outside, and sit, and listen.
And really, if living a life with M.S. is drawing me to sit quietly and listen... it's not that bad a life, is it?
And given the current state of affairs in the political "discussions" that abound today...
The ability to just sit and listen marks one immediately as "differently abled."
Sunday, August 5, 2012
Still fighting inescapable fatigue. Actually, I don't seem to have enough energy to "fight" it. And I don't really know how exactly to fight it, so...
Still experiencing inescapable fatigue. Made it to the store; got lunch & dinner, brought it home. Had lunch with my wife outside (not too hot at the time for such things) but between the two of those things, it was too much to ask. Back to bed, back to sleep for... I don't really know how long.
Took a few minutes at the machine to attempt to do something that doesn't require ingenuity or creativity. It eluded me (fault of the online documentation that's supposed to help you with such operations). Maybe will try to do something else that doesn't require ingenuity or creativity, just "doing." Moving files around, making links to said files for a web page, moving said files to the web site so that they can be acquired via aforementioned links.
Then, probably, back to bed. Maybe back to a chair. Or bed. We'll see.
And my "magical" wireless keyboard is [expletive upon expletive] malfunctioning BIG time, so I'll draw this to a close rather than hurl said keyboard through the window, propelled by the aforementioned stream of expletives.
[A pause, while Our Hero stumbles across the room to another computer. Windows 7. Great. I miss XP. At least it isn't (shudder) Vista...]
I'm going to try a leftover Microsoft wireless keyboard, not because I prefer Microsoft to Apple equipment, but any port in a storm, y'know? And if that doesn't work... I can barely spend the day at home out of bed, how exactly am I going to get to the Apple store?
One problem at a time... sigh.
Still experiencing inescapable fatigue. Made it to the store; got lunch & dinner, brought it home. Had lunch with my wife outside (not too hot at the time for such things) but between the two of those things, it was too much to ask. Back to bed, back to sleep for... I don't really know how long.
Took a few minutes at the machine to attempt to do something that doesn't require ingenuity or creativity. It eluded me (fault of the online documentation that's supposed to help you with such operations). Maybe will try to do something else that doesn't require ingenuity or creativity, just "doing." Moving files around, making links to said files for a web page, moving said files to the web site so that they can be acquired via aforementioned links.
Then, probably, back to bed. Maybe back to a chair. Or bed. We'll see.
And my "magical" wireless keyboard is [expletive upon expletive] malfunctioning BIG time, so I'll draw this to a close rather than hurl said keyboard through the window, propelled by the aforementioned stream of expletives.
[A pause, while Our Hero stumbles across the room to another computer. Windows 7. Great. I miss XP. At least it isn't (shudder) Vista...]
I'm going to try a leftover Microsoft wireless keyboard, not because I prefer Microsoft to Apple equipment, but any port in a storm, y'know? And if that doesn't work... I can barely spend the day at home out of bed, how exactly am I going to get to the Apple store?
One problem at a time... sigh.
Friday, August 3, 2012
Fair/Unfair
Inescapable fatigue.
I woke up this morning with an idea for a Christmas-Eve brass and organ toccata. I sat down at the computer thinking that I'd start writing it.
I'm going to finish typing this and then go back to bed.
This whole "inescapable send-you-to-bed fatigue" thing is quite new, in my life-with-MS experience. I've had "tired days" (who doesn't?), I've had "time to go to bed" days (who doesn't?), but day after day after day after day of "go back to bed and sleep" is new. And not at all welcome.
I managed to leave the house with a friend of mine yesterday for a sushi dinner. I made it, I enjoyed it, but I was uncomfortable throughout (sitting the wrong way in the wrong chairs is painful) and never really left the world of "constant fatigue."
And, I've been up too long, just typing this. Back to bed I go. Maybe, maybe, I'll summon the strength to brush my teeth first. Maybe.
I'd feel better about being fatigued if I was actually expending energy. Well, maybe I am, somehow, but just don't notice it.
I never railed against simply having M.S. as "unfair." But this constant "need to go back to bed and maybe sleep but definitely don't actually do anything," that seems unfair.
But fairness has nothing to do with ... well, anything, really. As Marcus said in Babylon 5, "Just imagine how horrible it would be if the universe was fair."
I woke up this morning with an idea for a Christmas-Eve brass and organ toccata. I sat down at the computer thinking that I'd start writing it.
I'm going to finish typing this and then go back to bed.
This whole "inescapable send-you-to-bed fatigue" thing is quite new, in my life-with-MS experience. I've had "tired days" (who doesn't?), I've had "time to go to bed" days (who doesn't?), but day after day after day after day of "go back to bed and sleep" is new. And not at all welcome.
I managed to leave the house with a friend of mine yesterday for a sushi dinner. I made it, I enjoyed it, but I was uncomfortable throughout (sitting the wrong way in the wrong chairs is painful) and never really left the world of "constant fatigue."
And, I've been up too long, just typing this. Back to bed I go. Maybe, maybe, I'll summon the strength to brush my teeth first. Maybe.
I'd feel better about being fatigued if I was actually expending energy. Well, maybe I am, somehow, but just don't notice it.
I never railed against simply having M.S. as "unfair." But this constant "need to go back to bed and maybe sleep but definitely don't actually do anything," that seems unfair.
But fairness has nothing to do with ... well, anything, really. As Marcus said in Babylon 5, "Just imagine how horrible it would be if the universe was fair."
Wednesday, August 1, 2012
Which road... ?
Well, this was unexpected...
Got up with the sun (bedroom window does face east, it's not all that hard to get up with the sun). Took my gotta-have-it-before-breakfast pill, lay back down. Felt great.
Stayed in bed for quite a while, but felt great. At least, reasonably good, but by contrast to just a few days ago, it'd have to be "great." Thought about what I might like to try to do, creatively, in the afternoon. Yes, to manifest something creatively, something that I haven't done for way too long. I felt like it just might be possible.
Didn't have any breakfast (I stayed so long in bed that I missed the "breakfasting hour" and I was hoping/planning on somehow lunching with my wife), took a shower, drove to the favorite Taiwanese food-and-tea place, brought back favorite food-and-tea for the two of us.
Eating... completely debilitated me. Lunch was not "Thanksgiving dinner"-style gorging, it was exactly the same dish that I've had time after time after time, with no reactions even vaguely similar to this. Pretty much immediately after eating, I had to return to bed. I barely had the strength to read stuff on the web via my iPhone. I slept some. I had to leave the bed around 3:30 to talk to the gardener (which I was able to do, but dang it did take me a long time to wall-walk to the front door to talk to him), somehow made it back to bed, stayed there for another two and a half hours.
So... this is great. Not eating... that's probably not good for me. However, eating... seems also not to be good for me.
Well, something's not good for me. Dunno how long it'll take to figure out what it is... There's certainly no point in looking for "why," but at least "what" would be handy to know.
So, another addition to the list. Things that sap my strength big time...
I wonder which road leads to the "winning" scenario? Clearly none of the above... With luck, I'm not seeing some obvious "middle way" or "out of the box" solution, but when two of the wrong answers seem to be "don't eat" and "eat"... Which roads are left for me to take?
Got up with the sun (bedroom window does face east, it's not all that hard to get up with the sun). Took my gotta-have-it-before-breakfast pill, lay back down. Felt great.
Stayed in bed for quite a while, but felt great. At least, reasonably good, but by contrast to just a few days ago, it'd have to be "great." Thought about what I might like to try to do, creatively, in the afternoon. Yes, to manifest something creatively, something that I haven't done for way too long. I felt like it just might be possible.
Didn't have any breakfast (I stayed so long in bed that I missed the "breakfasting hour" and I was hoping/planning on somehow lunching with my wife), took a shower, drove to the favorite Taiwanese food-and-tea place, brought back favorite food-and-tea for the two of us.
Eating... completely debilitated me. Lunch was not "Thanksgiving dinner"-style gorging, it was exactly the same dish that I've had time after time after time, with no reactions even vaguely similar to this. Pretty much immediately after eating, I had to return to bed. I barely had the strength to read stuff on the web via my iPhone. I slept some. I had to leave the bed around 3:30 to talk to the gardener (which I was able to do, but dang it did take me a long time to wall-walk to the front door to talk to him), somehow made it back to bed, stayed there for another two and a half hours.
So... this is great. Not eating... that's probably not good for me. However, eating... seems also not to be good for me.
Well, something's not good for me. Dunno how long it'll take to figure out what it is... There's certainly no point in looking for "why," but at least "what" would be handy to know.
So, another addition to the list. Things that sap my strength big time...
- Sitting in the wrong chair.
- Walking using the walker, for too great a distance
- Not eating
- Eating
I wonder which road leads to the "winning" scenario? Clearly none of the above... With luck, I'm not seeing some obvious "middle way" or "out of the box" solution, but when two of the wrong answers seem to be "don't eat" and "eat"... Which roads are left for me to take?
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