epiphanatic » 2007» September

Posted on 09.30.07 by jstoner @ 11:00 pm

[Context: I have a condition called muscular dystonia. This post is mostly for people who know me, and would care. For the rest, I will post my specifics soon. In the meantime, this is a general description.]

Burning Man, Buddhism, and now brain surgery. It’s been a pretty eventful few months. And it’s not over.

October ~~5th~~ ~~16th~~ 30th I go under the drill. [10/6 clarification: it's been postponed twice.] Two holes, two wires, deep into my brain. Thus the name: deep brain stimulation, or DBS. Then a second surgery the ~~24th~~ 7th of November, to implant and connect pacemaker devices–stimulators that will send a microcurrent into said brain, specifically, my globus pallidii.

It’s a big step, and like the other two, a long time coming:

I’ve tried all the drugs, and none of them add more than the side effects subtract;
I’m getting older, I’ve been walking funny a long time now, and my right knee and hip are starting to suffer. It’s not bad. Yet. I can see the direction it’s going;
I’ve considered brain surgery before–when I was a kid, they would lesion your thalamus with liquid nitrogen. Maybe it helped, maybe not. Maybe you lost the ability to speak. Primitive operations with advanced technology. They still don’t quite know what they’re doing, but they know a whole lot more than they used to. The comparative sense is reassuring, whether that makes sense or not;
The risks are low. I’m in good health: when I saw Dr. Bakay, my blood pressure was 100/58. It’s even reversible, and you can turn it off if it messes you up;
Dr Verhagen, the movement disorder specialist, and Dr Bakay, the neurosurgeon, seem highly confident they can do me some good. Dr Shannon, my regular MDS, says I’m a good candidate–people with my profile do well with DBS;
I have the necessary employment factors: full insurance, and supportive management;
I’m a person who has been skydiving, bungee jumping… just got back from Burning Man, excited to go next year… not that none of that scared me, or that I’m unfamiliar with the paralysis of fear, but some of it is my personality;
I’ve found a couple helpful online communities–DBSforDystonia@yahoogroups.com is a great bunch, lots of folks who’ve been through the exact same thing I’m doing.
I’ve tried for a long time to rationalize my fears–not so much to eliminate them, but to move my sense of fear beyond the instinctive response. It’s an educational process, including object lessons (skydiving) and also meditative practice. I suppose it’s been a somewhat coincidental process, but it’s helped me prepare for this moment.

Overall, the technology has improved (slowly) and my dystonia has worsened (slowly) and I’ve aged (slowly) and the lines are converging at a point where it makes sense to do this.

These are my two biggest concerns:

There’s a good chance it will help, and a not so small chance it won’t. I do have some of the best doctors in the world. But no one’s batting a thousand.
There is maintenance for this system. It requires new batteries every couple years. Yes, minor surgery, they open you up, pop out old batteries, and pop in new, all outpatient. Given my general pessimism about the state of the world, I can imagine a lot of scenarios where that replacement could be hard to obtain. That whole hell in a handbasket thing could make this more difficult. But this could help too. It’s certainly lower maintenance than botox.

I have other concerns, but they’re all pretty minor. The surgery is, well, riskier than skydiving, but safer than getting hit by a car, and I’ve done both more than once. The total statistical risk of death is one percent, and most of that is for patients older and sicker than I. And there are increased risks around infection. And electromagnetic fields–no MRI around my stimulators. I wonder what EMP would do.

It doesn’t sound like fun, but at least it’s interesting: you stay awake while they implant the wires, so they can ask questions while they poke around.

It’s actually an interesting procedure:

You arrive at about 5 am. They mount a frame on your skull, under local anesthetic, which they will screw to the table during surgery. This keeps you from moving, and gives the doctors a frame of reference while they’re poking around in there;
They MRI you, with the frame on. That way the frame’s position is in the data with the rest of your brain data;
They evaluate where they should put the wires;
They dump the MRI data to a program that plots a range of safe paths through your brain. They mostly want to avoid sticking an artery. Which is good, because I wasn’t planning on a stroke at this point;
They bolt you to the operating table, give you more local anesthetic, drill a hole in your head (bzzzzzzz! Yes, while you’re awake) and start poking around on one side. They’ll start with the right side of my brain, since the left side of my body is most afflicted–that whole opposite side brain control thing;
First they go in with a test electrode, zapping around (in a very specific area) to see if they get a good response in relevant parts of the body;
When they figure out a responsive spot, they put in the permanent electrodes, mount them to your skull (don’t want those buggers to move), and close you up;
If all went well, they repeat on the other side;
You spend the night in the ICU, and in the morning you go home.

Then, the following Wednesday, they implant the stimulators. They put them under your collarbone, and they run wires under your skin up your neck behind your ears, to the top of your head, where they connect with the wires in your brain. It’s supposed to be the more physically traumatic procedure.

That, of course, is just the beginning. After you’re a little better, they start programming the stimulators. Which takes six months to two years of experimentation. And lots of ups and downs–a setting helps, then some of the improvement goes away, then they make a new adjustment. It sounds like a long ‘three steps forward, two steps back’ process.

But it also sounds really promising. I’m kind of excited.

Updates will be posted here as events progress.

Filed under: life
Comments: 28 Comments

Cloud Gate

Posted on 09.22.07 by jstoner @ 10:25 pm

Made it official: I am now a Buddhist. Not just philosophically, but with a teacher, and a lineage, and a dharma name, and everything.

John Cloud Gate Stoner. I asked for an English dharma name, just because I like the idea of participating in the larger encounter of Buddhism with the West, and I thought it would be appropriately symbolic. As Buddhism has moved from India, to China, to Japan, and other places, it has changed those cultures, and in turn been changed.

That’s what makes being a Buddhist now so exciting: the substance of that process is working itself out in this moment in the West. We are seeing new ideas emerge, spiritual innovations like Big Mind, the integral stuff, and so forth.

That’s not the whole reason I did it, but it’s one reason. Mostly I just wanted to put myself on a path of spiritual mastery in a committed way.

When I got home from the ceremony, one of my neighbors said he would have to start calling me ‘Bean.’ Cloud Gate is also the official name of ‘The Bean,‘ the sculpture in Millennium Park here in Chicago. We had a good laugh.

When he gave me the name, my teacher did not have that in mind. In the ceremony, called jukai, he spoke at length on the significance of the name. My memory is not clear, but here’s how I’d say it:

In Zen, clouds are symbolic of reality, or manifestation. They are boundaryless: it’s hard to say where they begin and end. They arise as a result of unseen processes. And they lack solidity; there is nothing to cling to in a cloud. So the world is.

Gates are also symbolic of awakening, or a choice to awaken. In the bodhisattva vow, we say ‘Dharma gates are boundless; I vow to open them.’ So at every moment we are faced with the choice to open the gate or not, and in taking the Bodhisattva Vow I am committed to opening it at every moment.

So a cloud gate would be a gate of formless form, leading continually into awakening. Well, that’s about the best I can do with it now. Perhaps Joshin will post to the comments.

Filed under: spirit
Comments: 4 Comments

Burning Man gear

Posted on 09.19.07 by jstoner @ 9:46 pm

This part of my Burning Man report just didn’t fit with the rest of what I had to say, but I still wanna say it:

I’ve been camping three times in my life, including Burning Man. The thought I had was: ‘I may overcompensate. That’s OK.’ So I took just about every recommendation I got, and I managed pretty well.

The bike: the playa hates bikes. The dust gets in everything, and I mean everything. I didn’t ride much, but by Wednesday my bottom bracket was creaking, and on Friday it seized. My bike had a cool ‘Ganesha loves you’ sticker from my friend Srini, and Sunday someone said I should invoke Ganesh–he is the remover of obstacles, after all. So I picked up the bike and it rode fine.

Still, one lesson: don’t bring a good bike to the playa, but don’t bring the crappiest bike you can find. A neighbor at the coop had a bike she never rode, an ancient Free Spirit, and she gave it to me. Think of a bike as something you use up, like soap. You don’t want to run out of bike.

And another: make sure your bike is in good shape before you go. You can get help, but it’s better to deal with problems before you go, not once you get there.

One other lesson: maybe Ganesha really does love me.

I didn’t see as much as I wanted, I didn’t meet up with as many people as I wanted. I had a great time anyway.

The sunblock: This Neutrogena stuff is the bomb. I came back almost as lilly-white as I left. I have skin cancer in the family, so i don’t mess around with the sun. It’s also broad spectrum, which is a big deal, especially for those of us of excessively Caucasian persuasion.

The clothes: This was about as arty as I got. My friend Crystal decided not to go this year, but she helped me a great deal, just knowing what to bring. She made a couple brightly colored sarongs, which doubled as sashes and headscarves. She took a pair of gymshoes I never wear and turned them into these awesome leopard kicks. Check out the flaming shoelaces. A huge hit–everybody loved them.

The biggest compliment on the shoes was from 1-Luv, the girl who managed the Biodiesel Bus from the airport. She asked to see a show of hands who was a Burner virgin. I raised mine, and she gave me a puzzled look: ‘Those are not virgin shoes.’

The bag: Isaac of Chicagowig makes awesome messenger bags. Sam at the coop has one. I wanted one, and Burning Man was a good excuse to make the purchase. This is the bag. Well, was before impregnation with playa dust.

Great bag to carry stuff in. Great bag to ride in. I love the bag. Not such a great bag to live in: kinda heavy, especially with a full Camelbak. You gotta have your water with you at all times at Burning Man, and attaching it to a heavy bag didn’t work so well for me.

Nonetheless, I hope to get many years of solid use out of it.

The camera: This was the cheapest digital camera I could find, and it took great pictures. Crappy viewfinder, but I’m happy with how things turned out.

The shaving mug: I shave with a mug and brush and solid soap anyway. Coincidentally, this method uses very little water. Great way to reduce gray water.

Filed under: life
Comments: 1 Comment

Back from the Burn

Posted on 09.16.07 by jstoner @ 7:59 pm

I went to Burning Man this year. I survived. I had a lot of fun. Had some deep, life-changing experiences. I got home.

I went looking for more than a party. Something ill-defined, including a party, but more. Spiritual experiences. Creative and participative opportunities. Interesting people and art. Beautiful women. Found pretty much all that. No sex, no drugs, at least for me. Some things went very well, some not so much. But it was quite fulfilling.

My pictures are here.

My camp

Entheon Village is a big camp, about 400 people this year. The focus included green sustainability themes and a strong spiritual focus: the name means ‘a place to discover the spirit within.’ There were seminars, there were temples–a goddess temple and a zendo, there was visionary art, there were big parties with dj’s, there were people whose vision of spirituality was generally congruent with mine, people focused in different directions than I, and people I could quarrel with in small ways or simply enjoy their company. I generally chose the latter.

There were a lot of people engaged in shamanic or subtle-energy focused practices. Lots of art informed by various psychedelics. I met some folks who–shall we say–were exploring various states of mind. It was very interesting just to be with them.

I didn’t partake myself: I am looking seriously at having brain surgery soon. Didn’t think it was a good time to be messing with my brain in new ways. More about that in future posts.

I had some very intimate experiences, not sexual, just a relaxation of personal boundaries, interpersonal compassionate openings… difficult to describe in a satisfying way. With people under various influences, and not. Really beautiful to experience in a safe space. Entheon was like that, intimate, supportive, open. Lots of people who could just be loving without qualification or expectation.

Great people

Broadly, the mood at Burning Man was like that, a permeating sense of deep generosity. I think the gift economy aspect of the event creates that, a really welcoming atmosphere. As well as people who would do that in the first place.

One guy I met, Eddie Ray Watts, had this great sculpture project out on the playa, a beanstalk from the Jack and the Beanstalk legend. I took a few pictures of it, here’s one:

Eddie is a biochemist at Vanderbilt (I think?) working on some really cool combinatorial recombinant DNA stuff. Basically he’s developing techniques to produce protein varieties by the trillions, and test them against proteins that occur naturally in the body, trying to turn them on or off, thereby treating disease conditions. Expanding on current techniques, and reducing their cost.

And he makes this really cool art with his friends. I came up just as they were finishing and joined them at their camp for a beer. Very cool people. Lots of interesting cool people like that at Burning Man.

Attitude adjustment

I confronted the participative culture of Burning Man early. Entheon had a truck going out to Burning Man from Chicago. I requested a spot for some of my things, my tent, rebar, some clothes, and so forth. As the burn approached, I didn’t hear back about places and times to load stuff and so forth. I got concerned.

At this point, I had met the Entheon Chicago crew. Entheon is run out of Chicago, though it’s mostly people from all over the world. In particular I had met Koko, the guy running logistics. Koko is a great guy, and an odd combination of things. Very down-to-earth. Vegan. Makes his own clothes. Has a commanding presence, like a general on the battlefield. Long blond dreadlocks. Manages a lot of the Entheon operations.

Anyway, I was in the middle of a bitchy email to Koko and the relevant players, when I realized, ‘This isn’t really how I want to approach going to Burning Man, is it?’ Not to mention how that would go over with Koko. So instead, I started to ask, ‘Where can I help?’ Not that I could do much at that point. But it was my first point of real engagement with the spirit of the event. It was my camp too. Failures were mine too.

And that did carry through. I needed help with things–getting set up with my tent and stuff–and got it. They needed help, working in the kitchen, handling some positions–I stepped up. I brought some extra stuff–more rebar than I needed, an extra tent. I made it available. Because of my condition, my neck pulls my head down, so naturally I found moop. I picked it up. I did not rise to major player status in a 400 person camp, but I got in the spirit and pitched in.

I’d say the first burn was about getting a sense of what it’s like, and what you can accomplish in that environment. The second time, I’ll have to be more ambitious. I’m already getting ideas: shopping for hand-cranked ice-cream machines on ebay, plotting how to bike-power them, buying interesting toys on Sparkfun… my mind is racing.

While I met and worked with lots of people including Koko, I also have to call out the invaluable assistance of Kyle, who did most of the work setting up my tent. Kyle was creative, experienced, and resourceful, and set me up with a much more comfortable arrangement than I would have made by myself. Pepper, who was very busy managing electricity for Entheon–and dealing with exhaustion–took time out to make sure I got my camp properly broken down and shipped back to Chicago the night I left. Good help from good new friends.

And Crystal–totally, thank you for all your support, advice, artistic help, and friendship… you made the experience so much better, and the preparation so much more fun.

The defining moment

As great as the entire week was, I have to say the pinnacle was the first night. There was a full lunar eclipse, and the moon turned red, and the night sky lit up in a way I don’t get to see in Chicago. I lay on my back for a long time, looking at the Milky Way, thankful for this life. Like, in tears, no joke.

I went to Burning Man to mark the passage of turning forty. The experience was like the opposite of a midlife crisis: call it a midlife epiphany. I mean, life isn’t perfect right now, but it’s very, very good. I have a lot to be thankful for. I have a great family, good friends, a decent job, a lot of good things going on, and a lot of opportunities to help and support others. I’m starting to see the fruits of regular spiritual practice. Spiritually, intellectually, and emotionally, I’m in a very good place.

I can honestly say, I closed the distance in my mind between a party and a spiritual experience. The word that came to mind was ‘ananda,’ from the Sanskrit meaning a deep sense of spiritual bliss, beyond ordinary happiness.

Premature eburnulation

While I was having my epiphany, Paul Addis was allegedly burning the Man early. I couldn’t see it from where I was, and I’m glad. I was busy with something more important.

In and of itself, it was a great prank, or stupid and dangerous, depending on the facts as they emerge. I’m not that interested. I think he’ll get an aggressive prosecution, and an aggressive defense, and he’ll probably be dealt with fairly. He’s a lawyer himself, so he should be able to handle his situation.

I don’t think much of the point he was making. I’ve only been to Burning Man once, and I’m already bored of the chorus of old-timers protesting that ‘It’s just not the same,’ ‘Larry Harvey is an asshole,’ blah blah blah.

I want to say this with all due respect for those who have gone before, and full appreciation of some who were a great deal of help to me personally: This refrain is an ineffectual complaint. It doesn’t make any difference to the situation as it exists.

There’s some idea that Burning Man is turning into Disney: the participative culture is dying. It’s a spectator event.

I can’t speak at all to the Burning Man organizational issues Paul talked about. But I can see this much: it’s harder to provide participative openings as things scale up. Watch the current tv video of the Piano Trebuchet or the erection of the Crude Awakening oil derrick. I love it, but the scale of this stuff makes it hard to imagine participating. How do I pitch in when you’re setting up a 100 foot tower? How do I engage with that as art? It takes a bit more imagination: do I climb it, do I critique it, do I meditate upon it, do I draw pictures, do I have serious conversations with the artists…?

Or do I just look at it, dumbfounded at its mass, as it rises, stands, or bursts into flame? And how does an environment dominated by art like that invite or repel my own artistic aspirations? Am i inspired, or subtly intimidated?

I can see that there’s a problem, perhaps in the environment created now, perhaps in my response, and the responses I saw. Maybe there is a bad dynamic, suppressing the spirit that once was.

Here’s the thing: calling Burning Man ‘Disney’ does nothing to solve that or any problem or engage anything in a skillful way. Burning the Man early just invited more of the spectation that Paul wanted to criticize, and proliferated gossip, which is, again, rife with spectation. Truly creative gossip is fun, but rare. (Wish I’d thought of it when I was there: ‘Paul Addis and Larry Harvey were lovers and had a falling out…’) Trust me, it was not the wake-up call Paul had in mind.

Here’s one idea: organize a large number of novice artists, and display their work in a special collection on the playa. You could even create an online community for collaboration among different novice artists and projects. Maybe the Black Rock Arts Foundation could contribute small grants. Or not, maybe have some other financial base, or just let the artists raise their own funds. Maybe some of it will be less interesting, but it will get people engaged in making art.

Another idea: organize artists to design art to welcome and accommodate graffiti. You could establish some visual symbol that said ‘tag me.’

That’s just off the top of my head. There have got to be a million better responses than moaning about how much better it used to be. Ways to invite and engage people even as the event expands. Think, people.

Here’s another issue raised: as you scale up, there are new dynamics that come into play. It’s harder to be anarchic in a city of 40,000 than a group of 400.

I don’t have as useful a response to that as the other issue. I also come from a different value system from a lot of burners: I don’t have an issue with authority. I have an issue with authority misused or unfairly granted, but of itself it simply is. It has its time and place. I’m not an anarchist. I like my dad. And as I said, I don’t have any sense at all of the BMOrg issues. Maybe someone out there can pick that one apart better than I.

The bottom line is this: I don’t care how much better it used to be. I don’t give a shit about BMOrg politics. I care first and foremost about my own participation, and what I contributed (and will contribute next year) to the experience of others. The rest, to me, is secondary. And if Burning Man helps me deepen and broaden that spirit in my life, I call that success.

Filed under: life and spirit
Comments: 2 Comments