Wednesday, April 28, 2010

What if...?

I had a lovely session at physical therapy today. Gentle, and still effective. It was precisely tailored to my challenges, and my needs.

I visited my Chinese herbalist today. He created a formula for me, specifically for me, with 27 different herbs. To meet my needs, today.

Yesterday, my acupuncturist gave me a custom treatment. Every treatment meets the needs of the day in precisely the way that day's needs require treatment.

One of my former students, a few months ago, suffered a heart attack, and the lack of oxygen to his brain caused a rather serious brain injury. He is currently in a superb care facility, where he is getting customized care, precisely tailored to what he needs. His caregivers meet him precisely at his point of need.

My caregivers meet me precisely at my point of need. At whatever point, and whatever need, is presented on the day that I present myself for treatment.

How different would the MS world be, if there were no "disease-modifying drugs" that may, or may not, modify the disease (but 100% of the time come with wracking side effects), whose effectiveness has only been judged in the aggregate but is completely undeterminable at the individual level; and instead, each patient received completely customized treatment, designed to best address their individual challenges, as they were presented on the day of treatment?

How different would the entire world be, if we met each person who needed assistance precisely at their point of need? Yes, our experience with the aggregate suggests where and how we might begin to render aid, but by observing carefully, we could adjust what we offer to accommodate precisely the needs of the moment?

Efficient? Well, probably not... but if you're "efficiently" rendering inappropriate care, what good is efficiency? You're "efficiently" not helping people properly. Great. That's a great use of everyone's time. "Well, I didn't give him what he really needed, but at least it didn't take very long or cost very much."

If there's any single sentence I wouldn't want on my gravestone, it would be that one.

Tuesday, April 27, 2010

Re- (or dis-) connection

Nearly every week, I've needed a particular acupuncture point: Heart 1, "Utmost Source." Among other things, it reconnects you with the divine, and more specifically, the divine within.

I asked my acupuncturist, "What keeps disconnecting me from the utmost source?"

He said, "Your mind."

Well. There we have it.

MS. Wants. Me. To find. Enlightenment. And isn't above using really tough love to get me to do something about it.

Be not conformed to this world, but be transformed by the renewing of your mind.

Time to get to work, I guess.

The gifts of the spirit

The board of the church for whom I'm currently a bass soloist and informally "composer in residence" asked all of its music staff to write self-evaluation letters, based on a half-dozen questions.

Now, without going in to too much detail about my "faith journey" as some would call it, when you've been in the church-music business for nearly forty years, involved with every major denomination, several small but more interesting ones, walked out of a Doctor of Church Music program because the theological component was intellectually empty, and have spent as much time with people trained in Shinto and Shingon Buddhism as I have... well, you don't tend to hold to the usual cuddly/accessible doctrinal dogma. Fortunately, the Congregationalists (my current church) aren't doctrinal or dogmatic, they're very live-and-let-live, as far as individual differences go.

But the sixth question was, "Did the Holy Spirit surprise you?"

Here's my answer.

MS is the tool, and the manifestation, of the Holy Spirit. Its gifts are similar to, but not the same as, what have always traditionally been thought of as "the gifts of the spirit."

It has given me new clarity in both perception and expression.

It has given me new appreciation for simple things, like a smile.

It wants me to open my consciousness to new truths about "limitation." Some limitations, I argue for (and shouldn't). Some limitations aren't denials, but are signs pointing in another direction: "This road is not for you; open your eyes and you'll see the one that is, reaching towards you." And some limitations, just don't matter.

The gift it really wants me to receive... is enlightenment.

MS is the Word made flesh. Very, very oddly functioning flesh. Perhaps because that was the only way it could get my attention.

But, as Marcus said to Neroon in an episode of Babylon 5, "The next time... could you maybe choose a way... that isn't so uncomfortable?"

If MS isn't tough love, I don't know what is.

Monday, April 26, 2010

P/T begins

The first session of physical therapy, today. A very nice facility, the person who's supposed to be my primary therapist is respected amongst the staff for being the best one there at the neurological game, and she's the perfect combination of gentle, friendly, no-nonsense, competent, and compassionate. A few neurological tests; the only one I declined to do was "walk with your eyes closed," because (as I told her) I'm just going to fall over, just mark down "falls over" and I don't have to do the actual falling.

We talked about shepherding resources, making sure that I don't spend "too much" to accomplish "not much," about how seemingly innocent activities can be more depleting than we think--stuff we MSers all know too well already. I stopped her by saying, "The problem's not how much energy I'm using, the problem's that I don't replenish. Nothing recharges me."

That stopped her. "That's a problem," she said. Yeah, I know that. "What causes it?" she asks. Well, I told her, if I knew, I'd stop doing it and do something else, which would actually do the replenishing.

It's a problem. And I don't know what's wrong or how to change it.

But I enjoyed the physical therapy session. A proper amount of exercise, it's going to do me good, and maybe some of the physical degradation will be halted or--if all goes well--reversed.

But replenishing? That's another problem. One I've had for... months. Years, maybe.

And frankly, it's probably not caused by the MS, but it sure ain't helping the MS, or to live with it, or to live despite it.

The goal of the three-treasures herbalists is a state called "radiant health."

Well, I've found the polar opposite to that, emotionally/energetically. An interesting discovery. And a state that I'm very, very tired of living in.

Sunday, April 25, 2010

A surprise

I went to lunch with my wife today (had a wonderful time), but before we were both done, I was really uncomfortable: exhausted, joyless, and sitting on the metal chairs in the outside dining area was really making my legs hurt. She was having fun just being out with me (which we hadn't done for way too long) and she wanted to have just a little more fun before heading back home to work on our various projects, so I told her I could make it to one more stop. Getting into the A/C in the car and onto a softer seat made an immediate difference, but the "big tired" was really hitting me hard.

We went to a preserved-fruit shop she really likes--very sweet shopkeepers, they're very generous sharing samples of anything you're interested in trying, prices are quite good and we left with about a pound of various dried fruits. It was a nice shop, but I was still really tired, still moving very, very slowly.

And on the way back to the car, we ducked into a big Chinese supermarket.

And somehow, suddenly... walking through the aisles of sauces, and dried mushrooms, an amazingly stocked butcher's aisle (with ingredients like "pork bung"), and candies from Japan with puzzling names and graphics... I felt better. I actually felt better.

I wasn't filled with a desire to cook. Or to pick up multiple styles of soy sauce. (Because, of course, one is for sashimi, one is for cooking this, another is for cooking that...) But somehow, just seeing all those sauces, all those noodles, all that wild stuff... made me feel better.

Feeling "better" comes pretty rarely, nowadays.

It's so nice when it happens.

Saturday, April 24, 2010

Empty perseverence

I am, I am sorry to report, back to a perpetually-out-of-energy state.

For the past several days--most of the week, actually--I hit my marks, I suppose... I get to where I'm supposed to get, I talk to the people I'm supposed to talk to. Mostly. I think. Talking to individuals, actually, is about all I feel that I can do at all well. Talking to groups is semi-OK, but actually "accomplishing things" is not, and accomplishing things using things in the physical world? Not a chance.

We had two concerts at school this week, I played in both of them, well enough; certainly well enough for being two and a half decades out of practice on a brass instrument, and being that I was in the middle of a high-school orchestra and sitting next to a couple of eighth graders, I'm happy to report that my correct-note-percentage was among the top scores of the show. But it took a lot of energy just to be at school for the show, much less to participate in it. (I'll post a recording later tonight, if all goes well, I'll update this blog when I do with a link.)

Yeah, I made it there, and made it through. I guess... But it just sucked me dry.

I worked with my wife this week, recording some voice-over material for some clients. Doing the recording was OK, all I had to do was click "record" and "stop" and take notes, and it was very informative hearing her interact with the clients. But setting it up? Setting up the studio, acquiring some new cables, rigging extra equipment required for the gig... That nearly did me in.

(Now, what exactly does "did me in" mean? ... hmm... It's one of my mother's expressions, I do tend to use it a lot nowadays, but what does it really mean? Well, I'd have to say, it left me utterly emotionally drained, drained to the point of almost wanting to cry just from emotional exhaustion. Almost too tired to move myself around the room, or the house. Unable to think or understand anything more complex than single instructions like "hand me that piece of paper." Pretty much worthless, as far as "getting things done" or "fun to be around" go.)

Many of my fellow MS bloggers share very moving stories of the horrors they have to endure at the hands of their MS drugs. (Alas, none of those tales are offset by heart-warming stories of how those same drugs have changed their lives for the better.) I don't do those drugs, I won't have anything to do with them. Many of them also share stories about attacks, exacerbations, horrible acute neurological malfunctions. Thank God, I don't get those.

What am I afflicted with? Data corruption: so I can't feel or control my feet properly (and a few other annoying symptoms which I won't detail but trust me, they're annoying). And fatigue: mental and emotional fatigue, so all-pervasive that it borders on spiritual fatigue, and so intense that it's making me in many ways effectively worthless. Not as a "liver," but certainly as a "doer," because my ability to manifest, especially to manifest creatively, is being shredded.

So what does this mean? Nothing... yet. As my neurologist continually reminds me, with neurological malfunctions, you just never know what's coming up next, so it's always too early to say that something has come to an end.

But I am damned tired of it. In ever so many ways.

Tuesday, April 20, 2010

New possibilities

Well, I took the plunge. I started physical therapy. Spent about an hour getting assessed, got three exercises, made appointments to start sessions with people familiar with neurological issues/rehabilitation.

Looks like it will be a gentle process. A nice change.

Had a good acupuncture treatment today, and a good discussion/dharma talk.

I learned the name of a not-very-often used acupuncture point: The Dark Gate.

A piece by that name simply must be written.

We'll see what happens.

Monday, April 19, 2010

Connections; discoveries

Disconnection and reconnection.

I spent most of the last two weeks on my back, under the comforter, with a heating pad on my feet. Which didn't always do much, but it was worth a try. I didn't leave the house except for a trip to some sort of medical practitioner, and maybe once for dinner. I didn't drive my car, I was worried that I couldn't do it safely.

I "got back on the horse" by going to church Sunday. I felt very disconnected from all the goings on, I wasn't comfortable with my singing, I wasn't breathing particularly well, and because of various "where we were standing" issues, I had to sit separately from the group (otherwise I couldn't have made it up and down some stairs) before and after our anthem. Fortunately, my big worry (the driving) wasn't so bad, so I felt like I'd be able to make it to school today.

Which I did. But I'm feeling very disconnected from it, and everyone there. Not so much the students, especially the ones I have really good relationships with, but the "goings on" and the "doings" and the various operational minutiae that comprises a typical day at the school... I'm really out of it.

But to be honest with you... I couldn't say that I miss it. I've always been a loner, so being alone is pretty much my natural state. But "disconnected"... that's different. In some ways, I think it's a step forward, to not be attached (in the Buddhist sense), but throughout this whole MS process, I've never really been sure when I'm unattached, detached, or in some sort of denial. Probably bits of all three...

Reconnection. I had a very intense deep-tissue massage yesterday... think "Chinese acupuncture-inspired Rolfing." Lots of work on my neck, back, and legs. Now, you will recall, numbness--of a sort, more accurately "data corruption"-- in my legs was the first sign that something was wrong, and it's one of my most troubling physical MS-dispensed afflictions. But, MAN! During that deep tissue massage, did I ever have sensation. Lots of very clear sensation. Of course, it was nastily painful, it was deep-tissue Rolfing-esque work. But, oh, so much sensation! Sensation at an intensity and an amount that I haven't had in years.

And the cloud that I've been under for the past two weeks, which had been at least seeping away, a little, was very sternly dispersed by the massage. Something very significant that had been stuck, was unstuck by this massage.

I don't care how much it hurts. And "much it hurts"--oh yes. Very much. But, unfortunately, it seems to be doing something good. And simply sending nice clear data through the nerves is also good neurological therapy.

Tomorrow, I have my first visit to "physical therapy." Possibly the only "normal" Western treatment I've ever tried, on this MS trip. We'll see if that does anything for me. I expect that it will; at least, I hope it will. And who knows? Maybe "normal" can work, on occasion.

Stranger things have happened.

Friday, April 16, 2010

Limits; watching; intensity

I've spent the last two weeks at some sort of "limit line." Everything that I do, turns out to have been too much to ask of myself. I'm not at "physical" exhaustion, I'm at emotional, and most of all, energetic, exhaustion.

Two weeks ago was spring break. Last week, I took sick days and took the week off. Of everything. No school, no church. I worked with my wife on some voice-over auditions, it was often harder work than I wanted to do, but she is so good, and I really, really enjoyed just hearing her voice, hearing her give voice to her incredible talent as a performer, in my headphones. It was the best part of the week.

As of this writing, there are only 57 days until the school's commencement exercises. I'm wondering how I'll make it.

Oh, I'm sure that I can. After a fashion. Somehow. There's only a couple of Really Big Events left (a couple next week, one the aforementioned commencement, which for about 10 minutes--the processional--is my biggest show of the year). What I schedule to teach for the last quarter of the year is some of my easiest material, and I try to back off on what I ask of the students because everyone else is tightening the screws in the academic subjects, and I have no need to do that in this course, since it's not "academic" as such; and frankly, they need the breathing room. So, this part of the year is theoretically the "easiest" to get through.

We'll see about that.

I definitely don't think I want to pull the "temporarily disabled" levers right now, I really just want to make it through to the end of the year. But I am completely out of juice. My acupuncturist tells me my energy levels are up at the end of the treatments, but they're just not staying up. Even to the day after the treatment.

We'll see what happens.

Something else I've noticed myself noticing... I find myself taking notice of how other people walk. Without difficulty. They just walk. I don't. I still walk... sort of. (Damn, I'm sick of those words. I wish they weren't so... accurate.)

I'm not envious of them. I'm not angry at them. I'm not jealous of them. I don't have any emotion towards them, or their non-disabilities. Or towards counting myself not among their number.

But I watch myself noticing them. I watch myself seeing more, nowadays.

The world is very intense. Not "bad." Not "scary." Not "imposing," nothing negative. But it's a very, very rich environment.

And just being in it can be very intense.

Wednesday, April 14, 2010

Tea; one shot; and the heart

One of the first teachings of the Japanese way of tea (chado, cha meaning "tea," do meaning "way," from the Chinese "tao," and the same character used in the name of such better known arts as judo, kendo, aikido, and kyudo) is "Make the best cup of tea that you can."

I've always found this to be a very intensely profound concept. It's not "make the best cup of tea that can be made," or "make the best cup of tea that has ever been made," it's "make the best cup of tea that you can make, right here and right now, with the tools before you."

One of the most powerful sayings in kyudo (the way of the bow) is "Issha zetsumei." It's usually translated "One arrow, one life," but more literally, it is translated "One shot: life ends." It's not about elevating what you're doing to the heights because it's your one chance to make it big, or anything like that; it's about -- and I know I'm not even close to what it's really about--offering yourself fully to the shot and with the shot, because "one shot" is what you have to give.

Another esoteric thought, this time from the realm of Chinese medicine: The Heart official, according to the school of Classical Five-Element acupuncture, is the Emperor. Being the Emperor, it is also our connection to the divine; but more immediately, the Emperor is in charge. The Emperor is In. Charge. Of everything. To be in charge is why the Emperor exists. And if there's one sentence the Emperor can't tolerate, at all, it's "You can't do that."

Thanks to a perfect storm of circumstances (not starting with, but capped by, the MS), my Heart official has been battered by a lot of "you can'ts." And the Emperor isn't at all happy. With anything. He has been hurt, hurt badly, hurt very, very badly; and now, he's hiding--from the world that hurt him, that continues to hurt him. And he's also hiding from me.

And yet: I can still make the best cup of tea that I can. Whether that cup of tea is the cup I used to make, or might have been able to make absent the MS (or whatever life threw at me), has nothing to do with anything. I can still make the best cup of tea that I can.

I still can offer one shot. Doesn't matter what that shot "might have been." That shot doesn't exist, never has existed. Wouldn't exist anyway, because not matter where I am or what happened to me... I can still offer one shot.

Now, the task before me: get the Emperor to listen. Perhaps I should hand him a cup, a scoop, a pot of hot water and a tea whisk; perhaps I should offer him a bow and arrow.

But maybe, the first thing I should offer the Emperor... is a hug. Which of all the things in the universe, all the things that have been, are, may be, or will be... is what I think he wants the most, right now.

Monday, April 12, 2010


I spent a lot of the last few days sleeping more than usual. Waking up at 4 in the afternoon one of those days, I thought, "I'm losing a lot of life to this MS thing."

Now let's see if that's actually true. If I am really, honestly, losing things because of MS?

My legs aren't working that well any more, especially with regards to precision manipulation of musical instruments. Now, my doctor is adamant when he reminds me that they're malfunctioning now rather than forever, that he's been in the neurology business for more than a quarter century and he's seen MS patients who were wheelchair bound for life simply get up and walk out of the hospital because the MS simply stopped one day; he himself had a horrible exacerbation that caused his hands to shake, so he couldn't treat patients, and that simply stopped one day; and that with all things neurological, you just never know what's "going to happen." Therefore, it's always too early to say "it's over."

But even so, my legs aren't working, and I can't play the organ as well as I used to. I tried to learn the "Jig fugue" years ago (a Virgil Fox favorite) but I never mastered it. I'm not going to be mastering it any time soon, but honestly, I never really could play it; I still can't; so, technically, I didn't "lose" anything.

And really, all the abilities that I do have, and can still use, are only on loan; age and time will inevitably request their return. So, at the end of the day, they really aren't mine to begin with, so technically, I can't "lose" them.

I "lost" a day of work today, I'm going to "lose" a day of work tomorrow, I'll probably "lose" three more days this week, the way things are going right now. I miss my students, and many of them will be especially unhappy because I won't be there to show them the next episodes of the anime series we've been watching all semester, which they dearly love. But I am honoring my body's requests, I am not stressing it (as much as I would if I went to work, at least), I am doing at least something to facilitate its healing. So, truthfully, at the end of the day, what am I "losing"? I change my lesson plans, we watch the cartoon at the end of two weeks rather than at the end of one. Where's the loss?

To be honest with you, this is all intellectualizing. What has taken the biggest hit in the MS experience has been my heart. Not the physical heart, but the metaphysical one, (The Japanese have better terminology for these: they call the first "shinzo," the second "kokoro," also translated as "soul" or "spirit".) So truthfully, I'm not processing things properly with my heart; truthfully, I really don't know how I feel about this. Or much of my MS experience.

But intellectually, it has been a very interesting process. Even if it hasn't been a true "process," in the psychological/spiritual sense of the word.

Great. The central-nervous-system disease is messing with my legs, creating all sorts of odd physical sensations, sapping my spirit, and leaving much of my brain intact.

The gifts of MS are... strange? Interesting? Perverse? Twisted? Profoundly messed up, yet darkly funny? All of those? None of them, something else entirely?

Can there be any other answer to that than... "yes"?

Saturday, April 10, 2010

Size is relative

Size is relative. More than that... "Size" is only relative. And, more than that, size is created by you: by your perspective.

If you want an example from your own immediate universe, walk up to anything that comes up to approximately waist level. Look down on it. It's small.

Now lie on the floor, and look up at it. Now it's big.

It didn't change. You did: and all you actually changed was your perspective.

You want another example? Try to walk a mile. Try to walk to another state. Try to walk from one end of the continent to the other. It's big, this planet we're on, right?

Now look at this. And if that's not enough of a change of perspective, look at this.

Why do I bring this up?

I haven't been behind the wheel of a car in nearly seven days. I used to drive an hour and a half at the drop of a hat, to get to/from a gig. Heck, I'd drive an hour just to get to a restaurant. I drove four hours from LA to Las Vegas because it cost less than flying and took about as long, when you considered all the time you had to spend in various airports. Twenty-five years ago, I drove from Connecticut to LA. No problem.

I'm feeling very wobbly today, "sort of" faint but not really fainting. I've been wondering when I'd be ready to try driving again... I haven't decided whether it's fear or prudence that's keeping me away from the driver's seat.

Is driving a big or a small thing? Is not driving a big or a small thing? Whether it's inconvenient or not, whether it's practical or not, that's a different matter.

But is it "big"?

Size ... is how you define it. I know that. But how do I feel about the way that I choose to define it?

That... I don't know.

Friday, April 9, 2010

Tough love; depletion

Friends, if you wish to truly experience "tough love," and to grok its meaning to the deepest fiber of your being--literally--you only need get yourself to a really high-grade deep-tissue massage.

Oh my. An amazing experience--especially after you get up off the table, and stand up, and find that you're four to six inches taller than you were at the start of the session.

If I hadn't been getting this done for, oh my, what is it, over ten years now--it would have been truly horrible. (Just tell any masseur that "I've been Rolfed" and they immediately know the measure of your mettle.) And don't get me wrong, it can be unbelievably painful.

But oh, my goodness, for the price of that pain, you get back a body you had forgotten that you once had.

I recommend it enthusiastically. But you gotta make sure your practitioner is darned good, otherwise it just hurts--no "new body" bonus afterwards. Funny thing is, the fellow I'm seeing now is another Chinese fellow that we found completely by accident and yet who is unbelievably competent. And yet another instance where my iPhone's ability to access (an incredible Chinese dictionary) comes in handy. If you're working with a Chinese-medicine practitioner for whom Chinese is the native language, show them this; suddenly, things will become very different, very quickly, and always to your great benefit.

Well, that's the good news. The bad news... the nasty, wicked depletion, is still with me. I'm not sleeping through the night that well, but since (thank God) it's spring break, I'm getting in some nap time at home. This usually is a symptom of something my acupuncturist can (usually) cure pretty quickly, but although his cures work, they don't last, and neither of us knows why. (He says these things happen sometimes, and nobody really does know why. Oh well...)

But I'm still afraid to drive. I've only been out of the house to visit health-care providers, although we did have a brief lunch after chiropractic today. I haven't driven in nearly a week. I may--MAY--try to drive tomorrow. In car-crazy Los Angeles, where public transportation "can" get you there, but at a six- to twelve-fold time cost, "not driving" is a very, very big deal.

I am not willing to say that "I'm done driving," but neither am I ready to jump back behind the wheel. We'll see what happens...

Wednesday, April 7, 2010


A couple of "firsts," today.

Because my symptom upsurge is so bad, I'm having to call in a sub for this Sunday's church service. It's entirely possible that I'll be better by Sunday although there's no way of knowing that for sure... but whether or not I can perform on Sunday, I'm in no shape to prep for Sunday, and I think (and my doctor agreed) that I should assume the worst, that I won't be able to prep or to perform, and to call in some help. I think this will be the first time ever that I've bowed out of a church gig. The first time, or one of the only two or three times (assuming I've forgotten one of them) since 1973, the year I started doing church-organ performance. So that's um, what? Thirty-seven years of never or next-to-never calling in sick?

How do I feel about this? Well, I don't know if I feel the divine balm of "acceptance," but I know I don't feel the insistence of "denial," but I don't know if I'd characterize my feeling as "numb," "postponement" of actually feeling something, or ... "I don't know," which is probably the most accurate way to describe it.

Another first: I called some local physical therapists, who are covered by my insurance policy, to see what needs to be done to get into see them. My doctor said yesterday that I needed physical therapy--with audible italics. The bodyworker that he wants me to see (and that I want me to see, he's unbelievably good, even if he's definitely not covered under my policy) is in the Palisades, over an hour via usually-impassible freeway away, and basically impossible to schedule, especially in a way compatible with my work. The local guys are maybe seven minutes away (if I hit all the signals the wrong way), and covered by my plan. I figure, if they don't actually cause me harm, and do any good, they'll be just what I need. And they'll keep me going until I can see Cadillac Bodyworker this summer.

How do I feel about that "first?" Fine. Just fine.

Monday, April 5, 2010

Now, THAT'S comedy

Some new "symptomatic nasties" came my way today; it started yesterday, it really made its presence known today. I don't think it's what most people would call an "exacerbation," but it's definitely a surging of the symptoms, like a wave crashing unexpectedly high on the beach.

Dizziness that's not exactly dizziness; "poor attachment," one might call it, the mind and the body not really synching with each other. I'm almost unable to walk, but still can; almost unbalanced, but still can balance. I can sort of work, sort of think. (There we go again with "sort of." If I could think better, I could come up with a more precise way to express indeterminacy.)

The day wasn't a total loss: I managed to get some good work done on an orchestration project; my wife immeasurably helped me today, simply in digging up a phone number for someone for whom I'm doing said orchestration; and I was able to assist my wife to record some voice-over auditions. But I had to cancel a long-standing lunch date and evening plans, because me at the wheel of a motor vehicle right now is a very, very bad idea. Thank God that I'm on vacation, because I neither know how I could get to school, nor how I could deal with teaching any of my classes.

This is as close to "acutely disabled" as I've been for a while. Especially disappointing given last week's really quite wonderful burst of positive energy. I really hope it's an acupuncture-treatable condition (I'm getting treated tomorrow), because if this doesn't mend itself in a couple of days, I'm going to have to start canceling more serious commitments than just a lunch and an evening get-together.

Fortunately, even though my life is quite impacted right now, I'm "disabled" with regard to many of my normal life functions such as driving and dealing with the outside world, I'm not veering towards depression; not in the least. And I think I have my checkered past to thank for maintaining my "forward momentum" without dipping into despair. Like much wayward youth, my college days involved a great deal of... oh, let's call it "colorful and creative dissipation," and among the things that lifestyle teaches you is that (a) "unbelievably weird" usually turns out to be temporary, so there's no need either to freak out or to worry; and (b) how to make it home, no matter what shape you're in. So my head is swimming, I'm having trouble walking, and I'm getting all sorts of weird feelings from, and annoying malfunctions within, odd parts of my body. But I'm not depressed, I don't even view it as any kind of loss (not yet, anyway).

What can I say? I've lived through much more intense weirdness, and managed to make it through that. So, I've had a lot of practice "making it through" weird moments, weird times, weird feelings. Old news. Doesn't make what's happening to me any less unpleasant or any less unreal, but... Seen it before, in other forms. Been there, done that.

MS can be, in many ways, pretty funny. Darkly funny, very darkly funny, but you'd be surprised at how easily and often you can laugh at it. But really... the Hunter S. Thompson lifestyle, as the perfect preparation for life with MS?

Now, that's comedy.

Friday, April 2, 2010

Simple medicines

My zany Chinese herbalist often says that "Food is medicine," and recently ordered me to eat more meat. "Pork?" I asked (I like things with a little sweeter preparation, which pork usually gets.)

"No," he said quickly. "Beef, or lamb."

The last time I saw him, a week or so ago, the very first thing he asked me was how much meat I was eating.

The reason I mention this was that I went out to lunch with my wife this afternoon. I was feeling very severely spent, my "spoon" drawer had been sucked so dry that whatever had sucked out the spoons had also sucked away the shelf paper and the first few layers of the wood that makes up the drawer. I was enjoying being with her, but I was not in the least enjoying being out in the world, or even sitting up.

Remembering Dr. Xi's advice to eat more meat, that's what I ordered. That, and an American ginseng/longan/goji tea.

Well, the tea was absolutely wonderful. Very, very soothing; longan, among its other properties, is said to calm the spirit, and I've always loved American ginseng. The beef wasn't as magical, but it was well prepared, and just the right amount (I wasn't particularly hungry).

So we did a few post-lunch errands and we went home, and I lay down on the bed and slept for an hour or so.

And when I got up... I felt better than I have in weeks. Months, maybe.

I drove to the store. No problem. For the last few weeks, the "bad data" in my legs has made me wonder whether my driving days were coming to an end. Today, bad data as always, but somehow, I was able to work around it. My legs hurt as much as ever, but somehow, I didn't care. I enjoyed shopping; I indulged myself, getting fancy ingredients just for the fun of it (including splurging on some truffles for the quiche I was planning on making for my wife). Picked up some lamb, of course--doctor's orders.

I drove home without any problem, without the "Am I going to make it?" almost-panic that I've been living with for weeks. Yeah, my legs are pretty frakking weird, but somehow, I was able to make them work anyway.

I made two quiches--which took way more than the usual "dump and stir" method that I have usually been making them with, I did a lot of ingredient preparation prior to pouring everything into the pastry shells. And while that was underway, I did two loads of laundry. And then did the dishes, including the ones that had been piled up on the sinkboard, waiting for just this occasion.

For weeks, I've been living on the edge of collapse. This afternoon, after one pot of herbal tea, one dish of Chinese beef stew, and a good nap, I have the love of life, and the love of living, and the enjoyment of the simple tasks of shopping, cooking, and cleaning, that I haven't had since ... I can't remember when.

Well... you can bet, I'm going to be eating beef and lamb much more frequently, and taking naps in the afternoon, if that's all it takes to make me enjoy being alive.

Sometimes, the best medicines are the simplest.

Thursday, April 1, 2010


Sunny Southern California has taken a turn back towards winter. Well, it could be worse, in Connecticut we used to sing "I'm dreaming of a white Easter" because of how late in the year it would snow.

My legs are not just cold, they're radiating cold. They are so cold, they feel like they're the reason the weather outside is chilly.

And that coldness exacerbates (I hate to use that word) the odd numb feelings, the feelings that my legs--especially my right leg--are overfilled with frozen mercury. I did a little organ playing this afternoon, my left foot is still working (a little bit) but the right leg is really, really, really weird.

I was planning on shopping for a scooter this summer. I may need to shop next week. Driving is getting kinda nervewracking. I'm not driving dangerously, not at all, but I'm not confident at all with how accurate my feet are, when trying to find the pedals.

Spring break starts tomorrow. Maybe I'll use the time to hit the Pasadena Plunge and sit in the hot tub; I did that a lot last year, maybe it's time to go back. (Tried the bathtub; it's free, but not well sized to my extra-long legs and unsatisfying. As opposed to the pool, which is inconvenient to get to but glorious to sit in.)

I'm going to end the day by watching Alton Brown on Good Eats talking about the proper way to make a sandwich. Yeah, my legs are really weird, I'm starting to get really worried about them... but there are still pleasures in life, and damn it, I'm going to enjoy them. So there.