A long strange trip

My wife and I had a wonderful dinner the other day, with some highly creative and very dear friends; one of them told us about her wonderful experience at Burning Man this year, and it was clear that it was an amazing, life-changing, liberating and catalyzing-of-total-transformation experience.

And all I could think of while she was talking was... I first thought that I wanted that—not Burning Man, but the removal of chains, the catalysis of total creative transformation, an experience that both breaks bonds and heterodynes with one's own creative energies to create something new, something ... wonderful.

But then, it gradually became clear, what I was really thinking was that ... I was pissed. I was resentful, not of her (heavens no), I resented what I thought "had happened to me." I used to have experiences like that. Certainly, I at least used to be able to have experiences like that. But... not any more. All I could think was... that has all been taken away from me. Even the ability to have those has been taken from me, because I no longer have the creativity, the power, the love of life to be catalyzed by these experiences.

Days later, I still wonder... what's really behind that? Lots of things in my life have departed, opportunities and situations that facilitated all sorts of creativity, that have and had nothing to do with The Disease. Certainly, all sorts of things have changed because of The Disease. But what is the fault of The Disease, what's the fault of That's Just The Way Life Turned Out, and what part of it is entirely ego that really, really needs to transcend both its circumstances and itself?

Awright, I know it's ego. It'd be fun to blame it on somebody else, like The Disease, but that'd hardly assist in the "transcendental" department.

But I'll tell you what The Disease is definitely doing. What it is definitely taking away from me... distractions. Places to hide. Yeah, we can talk about neurological problems, inability to control my legs well enough to play the organ, the drums, to walk, to stand, fatigue upon fatigue upon fatigue... but what it's really doing is steering me down the spiritual road, the road towards transcending the ego and the self, that heretofore I only thought I was traveling.

Like I've always said, M.S. is precisely and only the human condition, writ so large that we have no option but to pay attention to the truth of that human condition, in all it's many not-always-pleasant-to-behold details.

And as a fellow M.S.er said, paraphrasing the Grateful Dead, "What a long strange trip it is."

Conflagration

Conflagration of discomfiture.

Walking... bad. Standing up... difficult. A bunch of other systems, details of which you really don't want, lackluster at best. A lot of this is the M.S.

Thinking, creativity... missing. This bit is an acupuncture condition (entry/exit block) which is compounding the M.S. lack-of-functionality. But it makes "I don't have enough energy to do anything even remotely physical, but I can sit here and do creative stuff" impossible. Anything that requires thinking—doesn't get done so well, in the blocked state. Add to that the M.S.'s fatigue/physical challenges...

Well, the easiest way to describe this is, "It sucks." "It," of course, being shorthand for "pretty much everything."

And, of course, that's just tonight. Tomorrow will be different. And the same.

Oh well. As Super Chicken always told his sidekick, "You knew the job was dangerous when you took it."

My best therapy

The first Friday of the school year. And everyone is still happy with each other, even if homework and reading and all that sort of stuff has been assigned. I ended the week, as ever, with our Anime Club, and we set the room shaking with joviality and laughter.

There's a special magic between me and my students; they are beginning to realize that they are absolutely their own person, completely unique, someone completely different from the person they always thought they should already be, or should become, or was going to become; they're the person that they are becoming. It's fun, it's scary. And they really enjoy having someone to talk to who only cares about that person, the person they are and that they're becoming; and to have a non-parent adult they can trust, and who they can sometimes just watch cartoons with.

And they're my best therapy.

Right now, as I type this, my right leg below the knee is going seriously, seriously numb, and I've got really shoddy control with the other leg too. Getting up to walk to the bathroom, to the kitchen to get water, is a major operation. Standing at the sink to do dishes, standing at the cutting board and the stove to prepare dinner... eh, I dunno about that. It ain't gonna happen right now. Maybe it'll happen tomorrow, at least a little bit. How much will I be able to do? I really don't know... I don't know how long I'm going to be able to stand in the kitchen, recently it has been so hard to do that, I wonder how long I'll be able to stand or walk at all. I'm in a bit (bit?!?!?) of an energy nadir, I'm loathe to try to do creative work because I'm afraid it's gonna be crap, I'm loathe not to do it because I'm afraid of having things spin out of control into "permanently not done," I know I'll hate doing the latter but I'm afraid of doing the former.

But at least, I know I can keep my job. And I enjoy my students. And I tell them, "I just showed you how to format a paper suitable for turning it in to pretty much any teacher, and I showed you a trick that you'll be able to use for the rest of your life as a computer user, and I promised you that all of my tests would be open-note. Not bad for the first week of school, is it?" And they laughed. And so do I.

And they are my best, my most wonderful, therapy. They may not help my walking improve, but they give me nothing but beautiful quality-of-life. Suck on that, Tysabri.