life

Jesus is my chainsaw

I’m formally Zen Buddhist. I took Jukai with Robert Joshin Althouse in 2007. But I grew up Catholic, and while I have multiple problems with Christianity, I still think there’s a lot of value in the teachings of the Jewish desert prophet. And while Christianity as practiced and understood today doesn’t work for me on a rational level, I do still have an emotional connection  to it.

Once a Christian tried to sway me with the line, ‘don’t think so much about this.’ That’s what we call ‘not understanding your audience.’ Yeah, no. But it does have enough of a tug on me that I don’t want to completely discard it. And I feel like repressing it could backfire in ugly ways. I’d hate to surprise my friends by going through a born again phase like Bob Dylan.

So an informal relationship with the the Christian tradition works best for me. I don’t consider myself un-Christian or anti-Christian, but I don’t think most people who would  call themselves Christian would call me one. Which is fine with me: I don’t have a need to fit anyone’s categories.

I came up with ‘Jesus is my chainsaw’ when I wrote this. It’s a line from a b-movie concept I’ve had in the back of my mind for a while, spoken by the evil Reverend Jim. ‘Jesus is my chainsaw! Come to Jesus! Bwhahahaha!’ But the more I thought about it, the more I liked it. So I’m making it mine.

I have a deeply perverse and absurdist sense of humor. And for me, humor does have an important place in spirituality in general. So, while others might say Jesus is their savior, I say Jesus is my chainsaw. Jesus was a righteous dude, who stood up for ‘the least of these,’ threw the money-changers out of the temple, and died for what  he believed in… I don’t imagine him as a one-dimensional guy, but he could be pretty badass.

Savior? No. Teacher? Closer. Chainsaw? Hell yes.

rethinking LNT

I identify as a Burner. I’ve been to Burning Man twice, though not since 2008. I almost went this year, but couldn’t quite put it together. Oh well. Next year. I have a lot of good friends in that community, and have a lot of fun with them in Chicago.

One of the Ten Principles of Burning Man is ‘Leave No Trace:’

Our community respects the environment. We are committed to leaving no physical trace of our activities wherever we gather. We clean up after ourselves and endeavor, whenever possible, to leave such places in a better state than when we found them.

Which is an important idea. I like it in a lot of ways. But as I reflect on it, I think it’s predicated upon what I’ve begun to think of as footprintism: the idea that there isn’t a legitimate role for humans to play in nature. That the impact humans have on their environment is their ecological ‘footprint:’ All things inside the footprint are ‘artificial,’ an interruption in nature and therefore bad. All things outside the footprint are ‘natural’ and therefore good. A footprint is to be minimized. I’ve written about it before.

And in some circumstances that might be true. Burning Man itself happens on the playa, an ancient dried lakebed, where the top of the food chain is marginally multicellular. It’s hard for me to think of a healthy role humans can play in that ecosystem, even just for a week.

But we don’t just go to Burning Man in the desert. We have regional events (Lakes of Fire is the one I’ve been to) in different kinds of locations, and we have various  local parties and events: Precomp and Decomp (events before and after Burning Man) are celebrated in a lot of places, and we have Resonate and all the various Freakeasy events in Chicago. Us Burners like our parties.

And outside the playa, it’s very likely we can find a legitimate ecological role for humans to play. That might also look like leaving behind a clean, intact environment. But it also means participating in natural and invented cycles: composting as much as possible, recycling where necessary, and minimizing (eliminating?)  landfilling.

We could also try composting and recycling within our community, and see if we can make that work. Upcycling event waste into art seems like a natural practice for us. We could even design our future waste (cups, plates, whatever) to use in some art project, or with some general purpose in mind.

I really hesitate to carry this line of thought much further, being as it might end with me running composting and recycling for Burner events, and I feel like I’m already pretty busy. Though, hmm…

bike powered ice cream

we interrupt the money hacking series to bring you the following shenanigans…

I had this great old ice cream maker—eight quarts, hand-cranked, cedar bucket, 192o’s-era ‘stainless’ steel canister—gathering dust in my place. I got it off ebay with ambitions to make it bike powered. It sat for over a year, until I came to terms with the fact that it would not fulfill its destiny in my hands. So I donated it to Pumping Station: One.

Soon after, Mitch Altman came to us with his Take On the Machine competition, and $3000. And it was on. Boy was it ever on. Because I’m running on wordpress.com, they won’t let me embed video (grr),  but you can see what we did here.

We actually ended up very close to my original vision, which was somewhat coincidental. There were a lot of creative people and strong personalities involved, so I didn’t want to try to control the process too much. A lot of good ideas made it in, as well as some engineering I would not have thought of (A u-joint for the drive coupling? Good thinking! Next time let’s not use one made of cast zinc.) The unit we have was almost a general purpose portable bike-powered unit. There’s a lot you could do with that, more than make ice cream.

The process was not a little frustrating. But damn, at the end that glow in the dark mint ice cream was tasty. It took a minuscule amount of fluorescein to make the whole batch glow bright under blacklight. I think we have enough left over to turn the entire city of Chicago’s pee bright yellow for a day.

Hmm… (more…)

back at it

So, I decided to sell generosity.org–it might be valuable, and I could use the money, and I wasn’t really using it for much. I moved the blog here: johnstoner.wordpress.com. No hassles, no upgrades, technical problems are someone else’s problem. I can just write. Which is why I wanted to blog in the first place.

Update for those who were interested in my surgery: my implants really never worked out. I could walk better–well, I could walk forward in a straight line better, if there was no crowd to navigate. I could barely walk backwards (which doesn’t sound like a big deal until it’s a struggle), and I couldn’t move in a responsive way. A friend of mine once picked me up and spun me around in a bar, and when he set me back down, I kept spinning, and almost fell over. Surprises while walking were always bad–if someone in front of me stopped suddenly, I was very unsteady. Crowds, again, bad.

I couldn’t talk well. No voice projection, poor enunciation. I got used to repeating myself a lot, but not being able to address groups was frustrating. And in job interviews, it’s been deadly. If you want to make an extrovert unhappy, take away his speech.

My whole sense of rhythm was shot. Forget dancing, it was hard to knock on a door, hammer a nail, grate cheese… I was also just generally weaker–I could ride a bike, but not fast. There’s a mental threshold of physical difficulty–some things just feel hard to do. The implants lowered that threshold, pretty substantially.

Anyway, in the last couple weeks, the batteries died. One thing that kept me from just shutting them off was my body’s response to the sudden cessation of current to my brain.  My neck would go into painful spasms. As the batteries died, they tapered off, so it wasn’t quite as bad as it had been.

Having them off is not a panacea. My neck spasms are stronger and more painful. My left foot twists more, and it’s more of a struggle to walk long distances. But I can make myself heard across a room. And my enunciation isn’t quite back to what it was, but it’s better.

I’ve discussed having the leads reimplanted in my brain with my neurologist. I feel like I’ve been through a lot without much to show for it. My thought is, I’ll look at it again when technology improves, and outcomes are more predictable. The procedure itself is a lot to go through, and it can take a long time to explore the space of possible settings, either to find the optimal setting, or that there isn’t a good setting and you need to be reimplanted. It’s still too hit-and-miss.

When I moved this site over to the wordpress servers, I looked back at my original posts. I realized I spent over twenty hours in surgery awake. I went through four surgeries. Going back in again, without much assurance of a better outcome, is a lot to ask. I’m not one to say ‘never,’ but until they can convince me the next time will go better, I’ll pass.

In the meantime, I’ll try yoga. I’ll probably go with yin yoga: lots of stretching, slow, low exertion. The hard part for me is figuring out where it goes in the design of my day. No, that’s a bunch of crap: the hard part is starting. Isn’t that always how it is?

And as for blogging, I think I’ll start again. I still have plenty to say. I love the interactivity of Facebook, but some things aren’t just for my  friends to read.

The March DBS adjustment

Went into Rush last Thursday for my most recent adjustment. It was the end of the study, they videotaped me, we ran through some questionnaires, same routine as at the start of the study. Then I got confirmation: I was in the experimental group. No surprise.

So, now I know what my settings are: the wires have four points of contact, where current can flow into my brain. The deepest one–“lead zero”–is the one with good results. I am running at .8 volts on the right side and .7 on the left. The pulse wavelength is 130 milliseconds, but they don’t mess with that. The pulse width–the interval of time during the ‘wave’ when the current is on–is 450 microseconds. I think it’s a square wave. I don’t know the amperage, I don’t think they can adjust that. I’m sure it’s a microcurrent. That deepest lead is directly above my optic nerves on both sides, but I’m not seeing any spots.

And it seems to be working. My walking and standing posture are substantially improved. My speech is distinctly better, though it might be just a bit worse since this last adjustment. My hands are a little more relaxed, though it’s a less distinct improvement. My neck is also a little less constricted, actually more spastic. I nod more, and stick my chin out when I talk. Actually that’s an improvement.

My balance is a lot better. Much more solid. I’m biking to work pretty regularly–three times this week, four if the weather cooperates Friday. I am a little tired, but it’s a good feeling. And my new layer of flab is diminishing again.

Just today I’ve noticed when I walk, the toes on my right foot curl in a bit. Not a problem per se, but something to pay attention to. And my right hand is still clenching, but a little less than before.

The other piece of good news: Medtronic is testing rechargables that are supposed to last ten years. They’re supposed to be available next year. My current ones are not rechargeable, and only last a couple years. Battery replacement is minor surgery, but still surgery.

So in a couple years when they replace my current batteries, they won’t have to replace them again till after I’m fifty. Now as long as the world doesn’t fall apart in the meantime…

the second adustment

Went in for the second adjustment yesterday. Or ‘adjustment’ as the case may be. It’s still a little unclear whether I’m in the control group or not, though I suspect I am.

My left hand is a little more relaxed. My speech seems slightly better just today. I did feel some pulling in my mouth yesterday during the adjustment session, but it went away. I wonder if he turned on the juice just to be tricky. My walking is going back to the way it was before the surgery.

I really can’t wait much longer to get back on my bike again. I’ve been waiting for the weather to warm up just a bit. Friday’s Critical Mass. I may go then.

How I am

I am fine. I am home, relaxing in my living room. I am mostly taking it easy.

They turned my implants on Friday. No results yet. They tested them again, and noted some side effects at higher voltages. As some may recall, I am participating in research, which means I might be in a control group. Meaning I might be getting zero voltage for the next three months. Or maybe not. Like I said before, it’s for science.

I still have a bit of extra shakiness–a little like after you fall off your bike. It’s been lingering a while. I tried to go in to work last week–made it through Wednesday, and decided I still needed more time off. So I’ve been relaxing at home.

Oh, one piece of linky goodness I found: David Byrne has a new piece in Wired covering the rearrangement of the music industry, with an eye towards new options for musicians. Fascinating to see things get to this point–you can begin to see the outlines of the future of the music industry. Really exciting and cool stuff.

The third and fourth surgeries…

…are done. I am through the worst of it. And I’m OK.

So, the story: as you may recall, they were only able to implant me on the left side the first time. The week before the third surgery, I went in for a test run with the implant on the left side. The results were not so good–side effects at low voltages. Also Doctor Bakay reviewed the position of the electrode, and felt it was off by a bit, they decided that as long as they were going to be visiting the neighborhood of my brain, why not stop in on the left side?

All fine. Easier done now than later.

So I go in for the third procedure, implanting me on the right side. The first medical doctor who does anything to you in a procedure like this is the anesthesiologist. There’s this guy, a med student (Rush is a teaching hospital). I roll with it: he seems to know what he’s doing. At some point you have to get used to doctors younger than you, right? I mean, he’s fresh-faced, but he’s not a child.

He inserts the IV. He starts some of the anesthesia. I’m feeling pretty easy, but I’m not knocked out yet. He puts me in the halo, which is weird–not painful, but it’s odd feeling your skull pushed out of shape. Presumably they MRI me, again–by then I was under.

I wake up in the OR, with them poking around in my brain, first on the right, then back on the left, Dr. Verhagen manipulating me, more static, yada yada. I was comfortable until the end.

A few things happened around that time:

The familiar pain of the halo points started to come back. Oddly, it was the points in the front that seemed to bother me most this time;

Later they started stapling my scalp back together. Pulling it and stapling it together. While I was awake. Quite painfully. This was not how it went last time. At one point I asked ‘Why do I need to be awake for this?’ As in, give me a damn general already.

They gave me a local at that point, and explained that they couldn’t give me a general anesthetic. I think it was because they were switching to the left side.

At some point, they finished up there, and started stapling my scalp together in earnest. Again, quite painful. They sedated me–which is not the same thing as a general anesthetic. Their words: ‘You’ll feel it but you won’t care.’ Well, I did, quite a lot, in fact.

I made my displeasure apparent, but they kept trying to reassure me it was almost over. I don’t recall how long this went on–it certainly seemed long. It was not unbearable, but it wasn’t fun either. I had been under for this part in the previous surgery.

It was so bad, I did a bit of wrestling with the idea of a lawsuit. It’s a tricky thing–I’m a person who could easily and profitably abuse the legal system in this country. I’ve given it some thought–could be a pretty nice lifestyle. But it just seems wrong.

And this case–well, it’s close, but it really does seem to fall in-no-harm-no-foul territory. As awful as the experience was, I’m fine now. No evident injury… so I’m letting it go.

Anyway, went through that, got the usual excellent care from the nursing staff at Rush, went through the fourth surgery, to implant the battery on the right side. (Actually they went back and reimplanted a new battery on the left, too–something about wires not meeting.)

And I’m back at my parent’s place again. Getting a little stir crazy. Also a little weepy, similar to what I experienced before. Though with an edge of justification–something else to deal with.

I want to go back to my place soon. I want these damn staples out of my scalp! My appointment to get them pulled is next Tuesday. They’re tighter-spaced than they were before, and they stick out more, and more crookedly. And there are more of them… I have a row across the top of my head and a row behind and above each of my ears.

At least it’s still an even job–should heal well, probably better than I had expected from the previous surgery. I’ll have what looks like an incipient horn on the left side. On the right it should be reasonably smooth. Nothing you would notice if I didn’t point it out.
They finally turn the damn things on Friday, the 21st.

the next steps

I am back at my place… laying comfortably on my couch, typing away, enjoying the smell of rice cooking in my own kitchen. Mom is a better cook than I, and I’ve enjoyed her cooking and care the last few weeks, but it’s nice to be in my own place.

I’m not planning to go back to work till the week after Thanksgiving. The following Friday (the 30th) is the next surgery–we start work on the right side. Then Tuesday after that (12/4) we finish that up, implanting the generator on the right. They want me to come in that Monday to test my current hardware.

This should be significantly easier than the last time. They drilled both holes last time, so no new skull holes. They think I should have some amount of anatomical symmetry, so they should be able to poke the same locations they found before and get some results. It’s reasonable to hope that this will go much more smoothly than last time.

After that we begin starting up and tuning the system. Fingers crossed: that’s where the payoff for all this really starts. Like I said, one step at a time.

the second surgery

Went pretty smoothly. They implanted my left generator (the pacemaker device.) I was completely out.

I was eating as normally as you can eat in a hospital later that day. No puking! Yay. I seem to have good range of motion–I’ve heard some people complain that their wires pull. I feel mine, but they don’t get in the way. I’m in a small amount of pain. They gave me vicodin. I’m back to Tylenol at this point.

I’m just taking it easy for now. Next we get the remaining staples yanked, and turn on the generator. Or, you know, pretend to turn it on.