Saturday, March 27, 2010


One thing to which I give a lot of lip service is the concept "prioritize." A lot of MSers talk about the "spoon theory," a metaphor that illustrates how MSers need to remember that everything--everything--takes energy, and if you don't have that much energy to spend, if you spend it all getting ready for and getting to the site at which you hope to have fun, you won't have any energy left to have the fun.

So I'm sitting here in my comfy chair, working on some school-related stuff... We're in the "gearing up" phase of a big technological project, and I was researching one of the new features we're going to try to implement: specifically, synching mobile calendars with a central calendar on some computer that's not wired to your mobile device. I just finished creating a Google Calendar for myself, stuck a date on it, and then had it appear on my iPhone. Having never done that before... that's pretty cool. Especially because I'm from the generation of Computer Dweebs who remembers having to set up your own server to do things like that, rather than just popping over to Google and have them do all the work for you. It's a wonderful world for the technologist, especially for one who remembers the many, many potholes in the road that brought us here.

So anyway, I just did that, and I'm sitting here feeling good about myself and the project, and I'm thinking that I really need to work on piece A or piece B or piece C or...

And then I realize, my brain is tired. My thinking is nowhere near as good as it can be, and frankly, I'm just sucking myself drier by trying to make it work when it doesn't want to, at this hour. I only have so much energy. I haven't done my kyudo practice in way, way too long. The outside air today is kinda cold right now, but it is gentle, and there's something nurturing about it. I can spend my energy on something that I'd do better when my brain hasn't already been sucked dry, or I can use what energy I have to do tote renshu, during which I have to send energy through my legs, relax, breathe, and put myself into a relationship of total giving and total receiving.


One of my priorities needs to be... prioritize living. Yeah, work needs to be done, you do what you gotta to provide the Four Necessities (food, clothing, shelter, medicine--which in my case, takes a lot of providing), but I have never been very good at "take care of yourself."


I still have yet to truly learn one of MS's first lessons: Live fully, live consciously, live intentionally. Don't just "do things." Live.


Why do we choose to make that so hard for ourselves?

Friday, March 26, 2010

Gratitude; numbness

Earlier this week, I read the tale one of my fellow MS bloggers told of her struggle with managing the "symptoms of symptom management," being battered by the side effects of the "treatments" she's receiving to make her "better."

I can't tell you how lucky I am to have a primary care physician who is also a neruologist with 30-plus years of experience with MS patients, who almost always finds ways to treat things without using drugs. Of any kind. Now, I have to admit that I'm steadily becoming more "differently abled;" I won't say "disabled," but there are many things that just plain work differently now, sometimes differently every day, and often those differences are very, very, inconvenient. Awkward. Uncomfortable. The list goes on... But although there are good days, bad days, very good days, and very bad days, I don't believe I've ever had a full-on "exacerbation." Maybe it's just the disease I have, maybe it's all those Chinese herbs and all that acupuncture, but those things directly increase the quality of my life, and have pretty much zero side effects.

But one thing I do get, and pretty much constantly, is numbness of all kinds. Numbness in my feet (makes driving very unnerving, is making organ playing nastily difficult), numbness blended with aching in my legs... and worst of all mental numbness. It's not just physical exhaustion that's plaguing me right now, it's mental exhaustion. I can't summon up the gumption to have decent ideas or even pay attention to things. Practicing kyudo requires both mental and physical effort, and coming up with both of those is pretty difficult, right now.

I get briefly recharged at the acupuncturists, but it doesn't last long. I'm not sure what there is that even can be done, much less what I should do.

At least I know what I'm going to do now: I'm going to bed. We'll see what tomorrow brings.

Wednesday, March 24, 2010

Depletion surprises

I got some orthotics this week. The directions say that you need to taper into their use, start with an hour and add an hour each day (the way bifocals, pre-progressive lenses, used to be worked into your life). My chiropractor, who prescribed and fitted them, said she hated hers for two weeks, and then she loved them.

I loved mine immediately. Sure, I felt like I was on stilts, but they changed the way I hold my pelvis, and it's impossible to stand or walk pre-crumpled (how I've been making my way through life the last few, oh, months, let's say). Vast improvement. Immediate happiness.

Except muscles that I have been mistreating for months are now getting exercised. So I'm tired in new ways.

Before I was gifted with The Disease, I would find myself tired by a long, full day. Now I find myself completely exhausted by half a day. Or an hour. Or a single class period. Fortunately, although I frequently find my students intensely tiring, even the most taxing class I do not find tiresome, and no matter what happens we often find reasons to smile or laugh (even when people are behaving a little... excessively, let's call it).

Time was when a Starbuck's green tea latte would perk me right up. Today, I found my beloved green-tea latte actually rather toxic. Oh well, that'll be the last one of those, I guess. (I'm getting very, very tired of the phrase "I guess that'll be the last one of those"...) I have considerably higher-quality matcha powder at home, I'll try that before I completely give up my green-tea-pick-me-up. But the green tea did keep me out of the nadir of the energy slump, and if that's gone... well, it's gonna be rough.

I got invited earlier this month to play an organ concert on the East Coast, some time later this spring. I'm gonna have to write them and say thanks but no thanks; basically, my organ-pedal playing is no longer concert grade, thank you very much, MS. Services, I can do, but concerts... I'm definitely sure that's a "no," at least right now. I'm not sure how I feel about that... I don't know whether I'm OK with it, or numb. Whether I've accepted the impairment or I'm in denial about my own feelings toward it. Although many things are possible, there's no reason that I have to think that It (whatever It is) Is Over, because after all, the one thing that's constant about the MS journey is change.

But one thing is for sure: "Certainty" is not one of the gifts of MS.

Saturday, March 20, 2010


Two sentences from Seth Godin's 3/19/2010 blog caught my eye this morning:

"Firsts are fun and exciting and it's neat to keep topping ourselves."

"Never is a lot harder than first, but I guess you get used to it."

Living with MS, we get a lot of both of those. The first time something starts malfunctioning. The thing you loved, or simply regarded as a "given," that you will never do again.

And yet, the Tao Te Ching tells us, "Up and down create each other." Firsts create lasts. Endings create beginnings.

Perhaps we need a new version of the "serenity" prayer. Perhaps, the "unattachment" prayer...

God grant me the unattachment to release both my beginnings and my endings, so that with open hands I can receive the gifts that those changes bring.

Thursday, March 18, 2010

Strangely unmoved

I'm waiting for the show to start; curtain's in about 2 1/2 hours. I dislike few things as much as waiting for the show to start. Except those shows where I actually push the metaphorical "launch" button--when I start the show, I don't dislike waiting, I hate waiting. At least on this one, I will be given the "go" for launch, I'm not the only one turning the launch keys.

I'm completely out of energy, I still have a couple of things to do to the lights; one involves crawling up to the booth to fine-tune a couple of focus points, the others I can do at the board just by pushing buttons. Good thing, too, I'm totally sucked dry.

I realized today that, for someone with three degrees in music and compositions you can buy on iTunes, I rarely listen to music any more. I put an organ channel on Pandora this afternoon while I was doing some not-in-the-theater pre-show work (it's playing right now), and one thing that I notice that it does not fill me with is a burning desire to play the organ. It used to... if not a burning desire, at least a warm and cuddly glow. Now: nothing.

Then again, I don't really feel burning desires to do anything anymore. And by anything, I do mean anything. I don't know if I'd call that a "gift" of MS, but it's definitely a symptom of it.

Spring is the season of the Wood element, and I feel it starting to turn our way. Perhaps that'll give me something to burn...

We'll see.

Wednesday, March 17, 2010


A brutal week; the big spring musical opens tomorrow, and there are thousands of details, endless rehearsal, countless refinements that do and don't get seen to. I'll be really glad when it's over, "fun" though it is.

And an interesting acupuncturing this week. One of the things we talked about was my walking, which has been steadily declining. Not only has my walking been degrading, but every day I get less and less interested in moving, and every day I walk more and more slowly.

I think that this is a self-perpetuating cycle of gradually increasing depletion. I walk without purpose, which means I walk worse, and when I walk, I don't really enjoy it, so I walk grudgingly. Without purpose.

So I told my doctor that maybe I needed just to walk with more purpose; and that would spin the cycle in the other direction, in the direction of support rather than depletion.

So he did something.

And somehow, I've noticed an increase in my purposefulness in walking.

During the long rehearsal after school today, I went without my shoes.

And without my cane.

A small change, maybe it'll only last an afternoon. We'll see.

But I am walking differently. At least, today.

It took me a long time to deplete to the state I'm in today. It'll take a while to refill, even partially.

But we'll see what happens. Spring is coming, there's a change in the weather, and in the energy of the world.

Time will tell.

Friday, March 12, 2010


Day one of the Big Load In for the spring musical at the high school where I teach.

The auditorium was incorrectly designed. It was not built as a theater, it was built as an auditorium, for which purpose it is more than adequate. To make it a theater takes a whale of a lot of work.

Now, before The Disease became an ever-present companion, I could load in a show by myself, with the help of only one student. Took three solid days of really intense work, but we could do it.

That can't happen any more. Fortunately, it doesn't have to; the new drama teacher knows how to hang lights (even the disco wobbly lights), he's able to direct a student crew to load in our rig with quite reasonable efficiency.

But I'm still trying to participate in the load-in work The Old Way, the Way I Always Used To Do It. And it was definitely a mistake.

This will be the last time I go by myself to pick up the sound order... operating a vehicle is starting to scare me, especially when my right leg goes so cold and puffy feeling, and it's bad enough without the added pressure of several dozen thousand dollars of sound equipment in the back. I've got a couple of beginners on my crew this year, very capable, very earnest, extremely intelligent; but what they're doing right now, they're doing for the first time, and it's ever so much easier to explain something if I'm right next to it, rather than trying to talk them through it by shouting from a distance. But that involves going up and down the stairs, walking the entire length of the campus--several times--and walking up and down the aisles of the auditorium, many, many, far too many, times.

I can't do that any more. I'm in pretty bad shape this evening, and this was just Day One.

We'll survive this one, of course... they call this time of the production calendar "hell week" for a reason. But I'm definitely going to be talking to the director after we wrap the show, about how I'm going to have to be even less help next year.

Not sure how I feel about this. Sad? Well, not really... Resigned? Well, not really... Accepting of my condition, and accepting the end what I've considered "normal," as "they way I always do things in the theater,"the way I've been doing things since 1985? Again, not really... Right now, I think the best word is "numb." Emotionally now, as well as physically.

I'm seeing way too many of these "never agains" recently, and if I'm not meeting them directly I'm seeing them starting to round the clubhouse turn towards the "meeting me" finish line. Like I've often said, it really is just the human condition; the end of things comes to us all.

But I'm not even fifty yet...

I think it's perfectly honest to call this hastening of things slipping away, at the very least, "kinda weird."

Tuesday, March 9, 2010


Not an "interesting" day. A powerful day.

I wrote yesterday about a conundrum about my relationship to my workplace; in the intervening 24 hours, I have had some very intense realizations about what has been wrong, and right, in my relationship to this particular workplace for ten years.

Things are clear; things are wonderful; things are very different. Nothing about the work environment has changed; but suddenly, I know where I have been going wrong, and why, and where I go right, and why.

And with this beautiful, clear light, a little sorrow, a little mourning. A "me" that has been with me for the last decade is gone. It was his time, and his going was a blessing for both of us; still, even if it was a deluded part of me, it was part of me, and their is a little grief at its passing.

And the pisser is... I might never have come to this place of self-witness, of self-realization, had not MS brought me on the journey that wound its way through this place, this moment. An amazing thing, this MS.

And in this wonderful day of clarity... my legs are screamingly cold. Yeah, the house is a little cold, but damn my legs are cold. This time, I think they're actually cold, too, not just false-nerve-data cold.

So, I'm going to do the dishes, turn this machine off, and go sit in the tub.

As the old, old song puts it... "This is the end of a perfect day."

Monday, March 8, 2010

Introspection; compassion

A very, very, very internally focussed day.

Started off with a meeting with a couple of vendors, one of whom we will be choosing to help us with a Very Big Project. (Details are unimportant, and have been omitted to speed up the narrative.) Suffice it to say that as far as this Very Big Project goes, I know more about pretty much everything than does any other single person at the institution.

Somehow, I'm not in charge of the project, nor is my input significantly sought after.

Given my energy level and ability to deal with being asked to multitask (the ability to do which has been especially sapped by The Disease), it's definitely a blessing not to have been put in charge. But I'm struggling with not being invited into the decision-making process. Yeah, I was at a meeting today, but there's follow-ups being done and other people are doing them and I wasn't asked to be a part of them because the other people are, well, they're taking care of them, and yadda yadda yadda.

If there's one thing MS has amplified--and believe me, it's amplified as much as it has confused--it's introspection.

There are a lot of "bottom lines" here, but one of them is that I'm realizing that I need to let people process their own processes. On their own terms. And to fail, if that be their fate; or their choice, even if they don't know yet that failure is what they've chosen. And, even assuming for the sake of argument that I'm "right" about how to approach the Very Big Problem, if people can't tell the difference between "right" and "not right," it's not my task to forcibly enlighten them.

I am not responsible for other people's enlightenment. And sometimes, letting them crash and burn may be what they need. I may be hindering their process by trying to save them from the fate they don't know yet that they have chosen.

There was a saying in the Science of Mind church: "I bless you and release you to your good." Blessing them is easy, even if you're mad at them, but somehow, releasing them... I've just been unable to release people to the care of their own good.

This is what is calling to me, here and now, tonight. And in freeing them, I free myself.

Oh yeah, also today, my right leg got scary cold. Dead cold. Driving and walking on it were especially weird. I've been sending it waves of love and compassion as I was walking today, waves of "I know it's hard. But we're going to do it together."

A day that calls for compassion for myself, and for others--the doing of which will express as compassion for myself as well.

Pretty intense, for just one day.

Friday, March 5, 2010


Some interesting changes since we last "spoke."

I still have the mid-afternoon energy dip; I don't have a to-the-minute grasp on it, but I think it hits somewhere between 1:30 and 2:30. If I hit it with some powdered green tea (matcha) I get a boost that renews me, but if I don't either hit the sauce (the stimulant sauce, as it were) or hit the bed--or preferably both--I'm in really bad shape by 4:30. But at least I can move through it. Sort of. (There that is again, "sort of." Can't seem to escape it...)

But the most interesting change is my relationship to my legs. Just changing my consciousness from a consciousness of loss to a consciousness of cooperation has done... something. I'm not sure what, precisely, but I can tell that... things are different.

Here's an interesting data point. Walking around campus is still slow and difficult (possibly because of the temperature, possibly because of my shoes, although I have ordered custom orthotics, that may help--at least that's the plan) but this evening, I've been walking all over the house in my bare feet and it has been really no problem at all. I've come darned close to enjoying it, the standing and walking. Which I don't like at all at school.

It may be something as simple as having come home, sat down, made a cup of tea for myself (today, sencha with a touch of matcha, a friendly and gentle blend), and gave serious intention to doing nothing but coddling myself, if only for a few minutes. Maybe just that gave me a few more "spoons." ... Actually, I'm sure that did an awful lot for me. Maybe it has been the chi-generative breathing and tote renshu that I've been doing the past few days--which I hadn't been doing for too long and for some reason, I just started again, deciding that even if it's the very last thing I do before bed, ten minutes (or however long) of practice is better than zero minutes.

But I think that simply changing my consciousness has done something. Being in a mind of cooperation, and of listening. And of sympathy, and of compassion, directed specifically for the parts of my body whose impairment is (for the lack of a better word) impairing my life with the greatest immediacy.

Compassion for yourself. What a concept. Too bad it took MS to bring me there. An interesting gift, no?

Tuesday, March 2, 2010


Had an interesting "voice lesson" this weekend at a concert at a local church, at which one of my works was being premiered, and also at which the choir was performing John Stainer's The Crucifixion. I was lucky enough to have a brief but quite enjoyable solo, the High Priest who condemns Christ, snarling "What need we of any further witnesses? Ye have heard the blasphemy." (Oh, I so love playing bad guys.)

I asked the bass soloist, a wonderful fellow who has an unbelievable resume that includes many a Broadway show, something about vocal production and volume, and he told me that there wasn't a single answer--you have to cooperate with the room. Give the room what it wants, and you'll have no problem making yourself heard. Above all, don't fight with the room--it's bigger than you are. Really, really, much bigger than you are. Work with the room, and you won't have to work at all.

Years ago, I heard an Olympic athlete say, "Obey nature, and nature will obey you." From an acoustical point of view, this makes absolutely perfect sense. But even as he was explaining this to me, I couldn't help thinking, there's a life lesson in this, too... and that's why this is the answer you're getting, here and now.

Had my usual acupuncturing and dharma talk today; got some gentle but profound points, working my energetic connection to the divine on the deepest level. We talked about my legs, too. I told him that I think that I feel them fading away; he told me that I need to get my consciousness back into them, and that they need to be exercised, even if they don't feel like getting exercised. Or in his words, "whether or not they feel like being exercised."

Earlier this afternoon, I thought, well, I guess it's time to start confronting the problem and fighting it. But then I remembered this weekend's lesson: cooperation, not confrontation. Right now, of course, I'm somewhere between acquiescence and denial, hoping the problem will if not just go away, at least take a little more time before it nails me forever. But, as we learn in aikido, the first move that you make is in the same direction that your opponent is moving; first, you move with your attacker, before you adjust his trajectory away from you. One exercise teaches you how, even before you even make contact with your opponent, to move yourself into a different position, so that you see things from your opponent's point of view.

So there's an interesting problem; if the leg weakness, the leg fading, the leg resistance to exercise, are all viewed as the opponent... first, I must see the problem from my opponent's point of view. Then, join with that energy, move in the same direction as that energy, and then, and only then... redirect it, to put it back into balance with the universe.

And to do any of that... I need to care. Something I haven't really had the energy... or, I've got to be honest with you, even the desire... to do, for a long time. A very long time. I need to care enough to listen to my legs, to connect my consciousness to them, and to redirect them to a state of restoration. Caring is the big piece of the puzzle I've been missing, and reconnecting to my heart was the main purpose of today's acupuncture treatment.

So that's it, for now. I'm going to put my computer down and go do tote renshu, empty-handed kyudo practice. Now, even at 9:45 at night. Because big changes are created by small changes. The first of the "eight steps" is ashibumi, planting the feet. And then, before you go on to the next step... you listen, to what your feet and legs are telling you about both you and the earth you're standing on, and the state of that connection.

The MS journey... is listening.