Surprises (nice, finally)

I had my truck's hand-control system adjusted this weekend, to fit me.

I also had him put in flip-up pedals, so that if the driver (usually me) isn't going to use the foot controls, they're out of the way, and the driver can simply stretch out his legs. (They flip down easily for "footed" drivers, such as one might find at valet parking.)

I enjoyed the control before, but now... I can't believe how comfortable driving is. It's more comfortable than it has ever been before.

I even drove it through stop-and-go traffic, up a hill. It was incredibly easy, much more comfortable than it ever was with foot controls, and certainly far more comfortable than it ever was when the truck was a manual transmission, and I was fighting with both foot pedals to inch up the hill.

I've gotten a lot of "surprises" on the Neurological Highway, but none as nice as this.

Nice surprises, I'll be happy to take. Any time.

The good surprises... keep 'em comin'.

Another first

So I sat down at the organ console yesterday, and ran through some of the stuff I'll need to play at commencement this upcoming June. I was able to make a reasonable shot at the pedal lines--I'm nowhere near able to take on fugues again, yet--but I thought that maybe, if I keep at it between now and June, I'll be able to deliver a "salable" performance.

But something new was making playing the organ difficult...

I've lost a lot of weight (I'm now down to high-school weight) in both fat and muscle tone. I was having a horrible time keeping my balance on the organ bench. Just sitting at the console wasn't working. I was nearly falling off an organ bench that's roughly three feet long and a foot and a half wide.

Yup. That's right. Of all the things that I never thought the MS experience would bring me to say...

My butt is too small to sit on. I need to make my butt bigger. I need to build up my butt.

Like I've often said... jokes like this, you just can't write.

Surprises

For the first time since The Diagnosis in 2007, I drove myself from Pasadena to my doctor's office in Santa Monica. Fifty freeway miles.

I also drove to the herbalist's office in Reseda--another fifteen miles, and I drove there en route to Santa Monica. The last time I drove there by myself (last year) it was in my then-still-manual-transmission truck, and had it kept raining, I was going to call a tow to get me home because I thought my control of the clutch was so poor that it was going to be too dangerous to drive myself. The rain stopped, and I made it home safely, somehow... but I did not at all enjoy it.

And today, it was no problem. Yeah, the hand control does still need some adjustment to make it more comfortable, but still--I did it.

A nice change.

I wasn't planning on doing this, but something came up and my wife couldn't drive me as she usually does, so... me having to drive myself was a bit of a surprise.

Being able to drive myself was an even nicer surprise.

And it was significantly more comfortable to handle stop-and-go traffic with a hand control than with the foot controls I've used all my life.

Now that was a really nice surprise.

[X]couragement

Had an absolutely wonderful day today, collaborating with a colleague of mine about the set design for our upcoming musical, "King and I." He's taking the production design in a very interesting direction, he loves my set- and lighting-design ideas. I'm in hog heaven. During our discussion, many new and wonderful ideas were born. I'll be building set models next week, construction will start within the month.

Musically--compositionally, I've been having challenges coming up with good ideas. Theatrically, I'm doing wonderfully. I love my ideas, and fortunately enough, so does the director. We really love working together.

Made one trip to one prop shop; it was a bit tricky navigating some of the aisles, but we found more than a few things we'd want to use in the show.

That was encouraging.

I got home, hit the bed, and sacked out for ... three? Three and a half? hours. Completely out of steam. It's too late to start working on anything, now (this was the best I could come up with).

That could be discouraging. If I had enough energy to gear up that emotion.

I've always -- until now -- lived the life of the easy overachiever. Do something big! Then work on something else that was big! Have dinner, and then work on something big!

My set design is actually, in many ways, pretty small. But it's powerful. Zen gardens don't contain a lot of stuff, but they have a lot of power. Is my fate to create things of great power, but not great size? Or great quantity? (At least, the size or quantities that I was used to?)

I suppose it's hardly a loss, if all I'm losing is volume... if the "density" goes up.

But I feel it as a loss. And if one thing the Neurological Road keeps reminding me, it's to not deny the truth of my feelings about the Road.

And denial is so easy. So very, very easy,

Throwing shoes

The neurological journey of one of my former students, as told by his parents, appears in this blog. The Neurological Road is very rough, for them; Grayson was a brilliant young man, extremely imaginative, enjoying life in the world of "theater tech" (a world in which he and I spent countless hours together in high school, and at which he was constantly getting better). He had a second heart attack--at 25!--caused by a not-entirely-properly-constructed circulatory system, not by dissipation; he lived a very clean life. He was without oxygen for too long before he was discovered and resuscitated, and his brain was injured. He's still the lovely person he always was, but... the best description is "the phone lines are down," he's nowhere near as talkative as he used to be (if at all, since "talking" doesn't come easily at all), his fine motor control is pretty much shot, and also he seems to experience a lot of what we MSers frequently go through: fatigue, and the more-than-occasional "world is getting too complex to deal with, I need to go somewhere quiet" syndrome.

His parents certainly live in a world very familiar to me, and probably to many of my MSer friends... Do these sound familiar?

It wasn't supposed to be like this.

I miss the old [fill in the blank].

What do I do now?

I am reminded of the byline of a lovely anime series, "Kino's Journey":

The world is not beautiful. And therefore, the world is beautiful.

The Neurological Road brings us into direct and inescapable contact--conflict? struggle?-- not with "a disease," but with ourselves. Everything that's happening to me right now is something that would happen eventually: I can't do X anymore, that piece (or those pieces) of the biological equipment no longer work like it (they) used to... but that's what happens to "those people." Usually "those old people." Not to me. It's not time for it to happen to me. It's supposed to happen later. (It's supposed to happen? Just not "now?" How's that "supposed" to bring me any comfort?)

Well, let me tell you, it sucks just as much now as it would then. And it sucks. It *&^#$ing sucks.

And yet, the world is beautiful.

So many Zen stories end with "and he was enlightened." I hope my MS story ends the same way. But then again, how many of those Zen stories had the enlightenment brought on by the master slapping the student, or throwing a shoe at him?

Maybe when I get the message, the universe will stop throwing shoes at me.

"Something new, every day"

I've been told that a good way to keep the mind fresh and alive is to see something new, every day. Several things, if possible. Not just to see them, to seek out seeing them.

Well, if working at a high school, filled with changing-every-day children wasn't enough of a source of "something new every day," the scenery on the MS road changes all the time. Sometimes, while you're looking right at it.

My first tip-off that something might be wrong, two years before The Diagnosis, was "sort-of numbness" in my legs. That, actually, has been changing.

The part of my legs that had been "sort of" numb, is actually starting to do quite a bit better. The diffuse probably-something-neurological ache is abating, I'm getting better surface/touch sensitivity, not just there but all over my legs.

Below the knee, sort-of-numbness (what I've called for a while "data corruption") seems to now becoming replaced by actual numbness. Walking around over the past couple of days, especially going up stairs, "sort of" sensation was replaced by full-on dental-anesthesia-grade numbness.

Something new every day. The world obliges your needs in the most interesting ways, does it not?

Dealing with it

The other day, there was some very interesting, and at times very heated, discussion on one of my fellow MSers blogs.

What little I know about other MSers experience is simply this: we all experience it differently, and our relationship with our state is different. Those discussions clearly exemplified both of those.

I can only speak of my own struggles, and Lord knows, I don't offer myself as any sort of example of "doing it right" and certainly not as someone who's "doing it better." Here's what little I know about my own experience:

I constantly struggle against thinking about MS as an "it." It doesn't have separate existence from me. It is me--or, more precisely, the name I've given my current state. Even giving it a name gives it separateness. There is nothing about MS that is not, 100%, me. I find myself saying "The MS took my energy" or "The MS took my summer." But that's not possible; it doesn't exist.

Sometimes we get stuck on single moments. Something intense happens, and we don't fully experience it, we don't fully experience our reaction to it. We remain stuck in that moment in the past, and our present is colored by that moment until we deal with it, and fully release the charge on that moment. My initial reaction when I received The Diagnosis was—deflection. "Those white blotches aren't supposed to be there," I asked the neurologist as he showed me my MRI. "Those are the scleroses of which I have multiple." He nodded. And what passed for my "reaction" to the diagnosis was precisely these words: "Well, it was going to be something eventually, anyway."

I meet every disease-associated change with deflection. I laugh. "You can't write jokes like this." And really, on retrospection, it often is funny, in a strange way. Or I shrug it off. "Oh well," I say. "It's an inconvenience, not a tragedy." Often that's a reasonable assessment, quite fairly made in retrospect.

I don't meet anything head on. I don't face it. I defer it.

Let's at least face it now; let's call it what it is. Denial. And that is something that I definitely have to meet, whether I want to or not. Clearly, right now, I don't.

I will say that since The Diagnosis, I have changed in many positive ways. Looking back over my life, I changed in positive ways after many horrible, horrible experiences. Usually, the more horrible the experience, the more beautiful was the outcome that that very horror facilitated—created. (Amazingly Daoist, actually, the way these things have worked.)

Did I "need" to experience those horrors? Well, I certainly "needed" the gifts that those horrors mysteriously created. For example, did I "need" to get fired from my job in 1983? Maybe not, but somehow that life change pushed me into a master's program in music, which definitely changed my life vastly for the better (and which changes still reverberate in my life today). And, y'know, I don't really care if that's precisely how the universe works. It just seems to work that way for me, and that's good enough for me.

I'll be very happy when the glories that my current state creates begin to manifest.

But, I'm beginning to think as I type, I ain't gonna experience them until I fully experience my current state, and what I feel about it. And what I feel about The Diagnosis, and what I really felt at the moment of The Diagnosis.

And I have to be honest with you, I don't think I'm ready to deal with any of that.

Well, as Super Chicken often reminded his sidekick, "You knew the job was dangerous when you took it."

Wonderful

Just took my final "hand-control driving" lesson. The instructor is very pleased with me, he said I was a great student and that he enjoyed working with me. We still need to fine-tune the control to increase my comfort while using it, but I'm driving again. That's pretty much wonderful.

The garage door opener malfunctioned. I dealt with it. I didn't fix it (I think it's beyond my means, MS or not) but I dealt with it. Considering that I've been pretty much mired in darkness for several months, that's pretty much wonderful.

The day is warm, the air is fresh, and I want to be outside. And I might very well just go outside. That will be pretty much wonderful.

Yeah, my bladder is a constant source of surprises, misinformation, and Three-Stooges-style comedy. I feel like there's something strange brewing in my lungs, which may blossom into full-blown "nasty sick."

So what. Today is, on balance, pretty much wonderful. And in the MS world--in the human condition, for that matter--you need to welcome the joys that are given to you.

And I do.

Yes, I've got things to do inside. I want to go outside. So...

Time to open the windows. After all, creative accommodation is one of the first gifts of MS.

Escalation

Another of the myriad changes that come and go on a seemingly daily basis... Walking across campus from my car to my office, in the wonderful, wonderful fresh morning air, I enjoy walking. It's still difficult and slow, but the doing of it is somehow not just possible, but enjoyable.

One of my fellow MSers tells me that he has always craved sunlight. I have always craved air, especially gently moving full-of-life and full-of-energy air. Which in the middle of winter was gifted to me, recent mornings. It has been quite wonderful, even if it has been too cold (sometimes too "danged" cold, sometimes too "@%$#" cold... at least it isn't New England cold, I'm glad I got outta there when I did).

An interesting acupuncturing and dharma talk this week. I was definitely very messed up when I got to the office, and thank goodness, significantly less messed up when I left, although the price was several quite nasty points (which, if you were suffering from the conditions I was suffering from, you'd beg to have needled, nasty though they be). One of the very nasty points was Meeting of Yin, one of the less nasty ones was The Great Hammer; both of them are said to be good for reviving drowning victims. "Drowning" definitely described my pre-treatment state.

We also talked about some of the stuff I discussed in my last entry. Cowardice masquerading as denial has been something that has plagued me all my life; it doesn't matter whether it's a challenging situation or not, but pretty much no matter what in life I need to face, I either have no fear, or I'm completely shut down. The path out of this trap is acceptance... something I've never really been good at.

And now, after time upon time when life has presented me things that I could not escape dealing with... here comes the MS. The most unavoidable situation I've ever encountered. And facing me is the challenge to accept it; to truly accept it.

And I'm not there. Yet (I hope "yet").

The universe presents you the most interesting paths to enlightenment, does it not? I've often said that when the universe wants to teach you a lesson, it taps you on the shoulder. If you don't listen, it taps you harder. Each time it tries to get your attention, it escalates until it does, moving from "tap" to "slug" to "two-by-four" to "eighteen-wheeler," until you finally get the idea.

Well, the universe has escalated its call to me to come to terms with "acceptance" to "maybe if we hit him with MS he'll pay attention."

Maybe I should, huh?

It's still damned hard.

Art imitates life imitates...

I had an absolutely wonderful time at an anime voice-over workshop this weekend, taught by a truly inspiring teacher and wonderful friend.

I did wonderfully. I didn't do it correctly.I loved every minute of it. I learned a lot. I learned ... a LOT.

The instructor likes to use this shorthand: We all have two actors. Actor One is all technique. He hits the marks perfectly. He gets the lines perfect. But he's not interesting. Actor Two has no technique. He misses marks. He blows lines. But he's all honesty. He acts, and reacts, with complete and unfiltered honesty. Actor Two's contribution is what makes a performance meaningful.

Actor One is paramount in my performances. Everything I do is swaddled in control. If something doesn't work, I try to control it differently. Comes from my work in music, I think... In performance, I've been (way too many times) in a position where I had to take control and save the show—sometimes taking control of the orchestra and conductor, use-the-Force-Luke style, if the conductor was losing control of the music. It's always worked beautifully.

In acting, control is not always the right answer. But that's the answer I always reach for, because it has always (up to now) worked.

I'm not really sure how to invite Actor Two to the party. Most of the time, Actor Two is hiding. He's afraid—not of losing control, he has none—but, I think, he's afraid of being wrong, and thus being yelled at. Certainly, in my world of music performance, being "wrong" isn't an option. As a result, I'm out of touch with my core. Head is fine, heart is fine, but my core, my innermost being, where Actor Two lives and where he gets all his power... isn't being engaged, in my acting.

And I'm beginning to think... so it is with my MS. My head is doing just fine, relating to the changes I'm going through, my heart goes up and down but I think it reaches out to people better than it ever has, but my core, my innermost core... that's not connecting to the MS experience. It's hiding. It's in denial, because I think that maybe... it's afraid. Not of being yelled at, but of no longer not dealing with the truth of my condition.

Fear can be faced with the help of protection, a condition of safety that's stronger than the condition that the fear fears. I know how to protect the mind from fear (explaining things the right way). Protecting the heart, that's not as easy... perhaps the key to protect the heart is with compassion, with sympathy, with love, so that the heart feels like it's not alone, like it's ...completely and totally loved, no matter what.

But the core... what protection will enable my innermost self to risk emerging and risk engaging, especially engaging with everything that is my current physical/emotional/mental/spiritual condition?

That... is the question. That is a gift that MS wants me to receive.

And frankly, I don't know how to open my hands to receive it.

And more frankly... I'm afraid to open my hands to receive it.

Perhaps that's one of the reasons I have MS. Why I needed to have MS.

Well.

Now what?

Another farewell

At the high school where I teach, I'm also the set designer and the lighting designer for the Really Big Shows.

I've had a lot -- a lot -- of fun doing this.

And except for one show (the student who designed the lights ran them by himself), for the past ten years I've "called the show." I wore the headset, I told the spotlight operators what to do, I told the light-board operator when to hit the "go" button.

I've had a lot -- a lot -- of fun doing this.

This year, we added a new person in the theater department, and somehow... calling the show got assigned to her. I "get" to play in the pit.

Do I have anything against this? Well, she is in the theater department. I am a percussionist. I still get to design the show, but somehow, when I went to the kickoff meeting, I found that calling the show had fallen to her.

And the more I think about it... the more I have to say, that's how it has to be. For the good of the show.

I had a flash of "What am I, chopped liver? I've been doing this for ten years? Why am I suddenly not doing it? Why do I not deserve it, after doing it for ten years, and doing things that nobody else has ever been able to do?"

And then I thought... well, I do have this whole MS thing going, I am spending my days in a powered wheelchair... I am having a hard time "keeping all the balls in the air," I've always been a better single-tasker than a multi-tasker, and when you're on the headset, God only knows what you may have to deal with. And truthfully, I don't think I'm the person to handle that sort of thing right now (I'd like to say "any more," but let's stay with "right now").

This is hard. On the one hand, being barraged with chaos can actually be painful, nowadays, so it's probably safer for me to be in a less barrage-vulnerable position. On the other hand, it's something that I have really enjoyed doing, and the students who have worked with me on the headsets--we've become quite the team, and we love working together. I think it'd actually be better for her to do it, and for me to play in the pit because the number of "unexpecteds" I'll have to field will be very, very low. So for the good of the show, I have to say goodbye to that.

Usually, on the one hand, there's a good option, and the other hand, there's a bad one. This time, there's a bad option in each hand, and the only correct answer is to open my hands and let them go.

MS teaches you lessons you need to know. Whether you want to be taught those lessons right now... well, maybe you need to deal with that, too.

Oh well.

Huge (in its own way)

A few huge things today.

I drove to the store. For the first time since... August, I think. I bought my wife a flower, the potato chips we both love, and the relish I've been longing for. Doesn't seem like much, but just being able to go to the store on my way home to satiate that "damn it, I want that relish" desire, is very, very, satisfying.

That was huge. In its own way.

I timed myself, walking ("walking," in quotes, as I'm coming to think of it) from my car to my office. Now, I haven't run a measuring tape, but just to give you a rough idea of the distance... oh, let's see. Imagine the width of a street with only two lanes (one each way) with barely enough room for cars to park on each side. Your basic suburban residential street's width. Call that one "width unit." Street is one, from street to truck in the parking lot is around one and a half, office to street is... let's call it two and a half. So, five "width units" distance. More simply, cross the street five times, and that's the distance I travel.

That took me seven minutes. I made two trips today, timed it both times. Seven minutes, to cross a two-lane street five times.

I used to walk miles per day. Now I take days to walk a mile. With a walker.

That's ... huge. In its own way.

A postscript: I have never been so glad to not being going down the Western-medicine path of the M.S. Highway than when I read this. It also seems huge, in its own way.

Better... ... ?

Well, what's new so far this year?

I have my wheels back. The hand control is installed, and I'm "flying solo" to work. The control needs a little adjusting, it's a little uncomfortable, but it works. And it gets me to work, on my own terms. I'm not yet up to "stop by the store on the way home" adventures, but I like having my car--my independence--back, in whatever state it happens to be.

I'm finding it strangely easy to drive at or just a hair below the speed limit. For Southern California, that's just plain abnormal... obeying the speed limit.

After I drive to work, I park my car in the lot and then use the walker to cross the street. I "walk," and I can't possibly make air quotes big enough around "walk," at a positively glacial pace. But, considering what else I've lost, it's still nice to say "I walk."

I was almost hit twice today, crossing the street to return to my car. In the crosswalk. With the signal favoring me. Everybody else where I work, adults and kids alike, just crosses the street when/where they feel like it, but I always--always--use the crosswalk and the pedestrian signal. Because, if anything happens, I want to be able to tell the investigator, "I was in the crosswalk, the light was green and the pedestrian signal told me it was OK to go. I was using my walker to cross the street--in the crosswalk--when the car hit me. Is there any part of this that you'd like me to go over again?" Doesn't make getting hit any less painful, but it does simplify the paperwork.

School's back in session. Just being around the kids makes me feel better.

I'm completely out of energy--hurting from being so much out of energy. I had an idea about some music to write, this morning... I lost it nearly immediately, because I didn't have a chance to write it down. I have the idea, still, but I'm going to lie down instead of keep staring at the computer.

So, I have my car back, I'm surrounded by the students, we hold each other in very high regard. I'm happy.

I'm so exhausted that it hurts.

So, I guess, on balance, I'm ... better?

Same and different

Amy Gurowitz shared some interesting insights into her MS experience.

It's precisely my experience. And completely different from my experience.

It's interesting that so many of us MSers have the same experience: ambiguity; impermanence; being forced to confront the human condition, looking it -- and our mortality -- squarely in the face.

The road it takes to share this with us is unique to each of us. Our symptoms are similar, but never exactly the same. The medical tools we use to do our best to moderate/buffer/ease the experience are also unique to each of us... and they each, in their own way, are from time to time partially, but more frequently un, successful.

No matter what physical symptoms afflict us, it always manifests itself as a spiritual journey.

And if MS is nothing but the human condition, writ so large that we can no longer ignore it, does that not make the human condition itself ... that very spiritual journey?

The spiritual journey, I know I need to face. The physical symptoms... those, I could very easily live without. But those very symptoms are what confront me with this inescapable spiritual journey.

What a pisser.