There are easy times, and there are hard times. Days when I feel like a real boy living a charmed life, and days when I feel stunted somehow. I think it’s in my wiring to be… not bipolar, but functionally cyclic. Cyclic in how I respond to data and stimuli.

The pattern was more distinct and regular in college, when my work itself had something of a fractal ebb and flow, and I was meeting regularly with people in various positions in my support net and being more deliberate about self awareness. Things never got too far in a bad direction before being caught, and conversely there was way too much fun and novel stimulus to maintain good habits forever. Neither state was ever stable.

Now I work in a technical office, where projects typically have monthly deliverables. But in practice one month’s work can run seamlessly into the next. And I’m more independent at home than I’ve ever been.

I see larger patterns now, and smaller ones. Six months of head-in-the-sand server development where I become rather short-sighted and difficult to work with, followed by two months of interaction design where I’m highly participatory and best friends with everyone. Then I’ll get in a fight with a friend, or worried about my latest bloodwork, and for a matter of hours or days nothing works and I can’t focus worth a damn.

It’s particularly hard to control lately. I accept this as a natural result of medical pressures, and the poor sleep habits I am trying to fix, and I cut myself some slack.

Today was by and large a good day. I found a new housemate for us, I made calls, and started some things. I continued my recent trend of sticking my finger into lots of figurative pies, which is really a wonderful thing if I’m having a productive day/week/month. It means I actually grow as a person and get my name out there.

Then tonight, I had to deal with someone in a business context, and it was one of those situations where I struggle to plant my feet and act like a normal human being with a spine. People like that make me feel as if I still don’t understand people. Still haven’t learned, haven’t come so far since the boy with foot in mouth and hand in cookie-jar. Bleh. One step forward, one step back.

Of course, the real story behind the data isn’t the local minima or maxima, it’s the trend. And for the most part I’ve been feeling increasingly self-assured as a person, if not as an engineer. As an engineer I’m still relatively fresh, subject to increasing responsibilities and to the Dunning-Kruger effect. As a person, I’ve had a bit longer to come to grips with who I am and what I’m capable of. And recent experiences are helping to further crystallize it for me.

I’m like this:

Rise and fall, fall and rise.

The bullet points in no particular order:

• All moved in at the Somerville house (a.k.a. the Grotto)
• +5 pts to Mass RMV for making the permit process a lot easier
• Interesting AANE reads
• CML update: the treatment is working!

For the sake of getting it all out, I’ll approach this in reverse-chronological order. I just capped off the day with a long conversation with my new roommate Maya, as we were taking out foodstuffs and dishware and looking at artwork to fill a missing spot on the mantelpiece. I think I may be the one missing her the most when she leaves in Sept, although these late night conversations are the longest (and among the relative few) that we’ve had since I met her in the earlier days of the Grotto. She brings a lot of different things to the table. Things for which, I fear, we will not find any sort of continuity with most of the people applying to replace her.

Maya’s a good foil to us weird-minded geek programmers – she loves and uses tech, but isn’t “of” it. She’s an artist and a musician and a baker and a consummate aesthete. Put new [music|art|food] things in her living space, and she will gleefully examine each one before weaving it into its most appropriate location in the fabric of the nest. She really appreciates that I have so much useful stuff to bring to the grotto; I’m glad somebody does. Ahem.

I explained to her the situation vis. my cancer and meds, because she asked, and that probably because I’d mentioned I have a drug regimen that limits personal use of my rather large liquor collection. It was an opportunity to try on some new lingo for size that I received at today’s appointment.

So far I’ve been talking a lot with people about “cellular response” or “hematologic response” when I discuss my cancer. This is how doctors look at the early months of CML treatment, when cellular imbalance is the main concern. Once the density of the various blood cell populations has been restored to approximately normal levels, long term monitoring of molecular response begins.

This means using more sophisticated and sensitive (and thus lenghthier and more expensive) tests to measure the prevalence of the cancer-causing mutation in blood cells. Known as reverse-transcriptase polymerase chain reaction (or RT-PCR if you don’t like pain) the test accurately charts treatment progress until the mutation is no longer detectable within margin of error (molecular remission).

On February 18th, I tested positive for CML with almost 100% initial prevalence of the Philadelphia chromosome. Now, five months later, that figure is down by 95%. I’m on track to be in molecular remission well before the 18-month mark doctors aim for.

I was kind of thinking the news might be even better, as Dr Friedman had talked about possibly needing to confirm a remission as of this month, with an additional test. But I’m also kind of glad it’s this way for the time being. The confirmation test is a bone marrow aspiration followed by cytogenetics. Not only is it expensive and lenghthy, it’s painful and unnerving. I rely on Atavan to get me through that shit.

So news is good, and on top of that I’m coming to terms now with being a Somervillian. Getting a resident permit for parking was a big step. Did you know: the RMV can change the address of residence/garaging associated with your driver’s license, online, in less than five minutes? That’s an e-government success story right there. Plus: All of my stuff’s now here and unpacked, and I managed to assemble a fully-working power cord once again at work Monday, so I’m back to typing away happily, not worrying that my machine will vomit and keel over from sudden lack of power. I still kind of want to find a cheap-o laptop to replace the dying D600 for home use.

Anybody want to point me at a good supplier for mid-range laptops that are not factory-installed with Windows? I think I heard EEEPc. That’s on the low end in terms of power, but might be acceptable.

Also: I read the AspBlogosphere blog from AANE. The feed’s activity is really erratic, but every once in a blue moon something interesting comes up. The Body Language of Machines is a really interesting analysis of something I, like most people, take for granted: the ability to read and react to other drivers’ intent when driving a car. I would posit that this is precisely the kind of capability that defines and validates the K/A boundary between Kanner syndrome and Asperger syndrome. A psychologist might disagree, I don’t know.

I, for one, have never had any trouble making the intuitive leap between expressions of the human body and expressions of a vehicle controlled by that body. At least, not that I remember. When someone’s hugging the lane boundary, you sense their impatience to move to the left. Same with tailgating. Things like driver eye contact and hesitation are seamlessly meshed with car signaling and positioning.

But suppose you never realized that? It’s sort of easy to imagine not being able to intuit (and quickly process) that kind of information, and what kinds of anxiety and paranoid behavior the deficiency would lead to. Maybe, if you can understand that particular failure to connect the dots, you can understand the dozens of subtler failures that characterize the autistic spectrum.

So basically, in summary, zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

/me slumps over and falls asleep

The ducks look great, and they are ready to swim. Latest word is we’ll be setting up between 3 and 6 PM near MIT’s Tang Hall. Then, the mayhem begins. If we’re not in the news come Monday then we must have done something wrong.

I’ve been too busy either living it up, or stressing over the work that needs doing, to spare a moment in a while. Let me see how quickly I can recap.

May was dominated by commencement, alumni reunions, and the raucus kickoff of Artisan’s Asylum, a new maker-space in Metro North. That project has since gained a lot of attention and momentum, and I’m proud just to say I’m friends with these people, given what they’re achieving. Whether or not I make much use of the power tools, I think the Asylum as a community is a resource with immediate value.

I’m biased, of course. More on that in a moment.

June has been largely spent with my beak in the sand, just trying to get product out the door, and being frustrated that as a result my delivery timetable hasn’t sync’d up more cleanly with everyone else’s. But even with that, and all the stress of the anticipated move to Inman Square, I can’t help but smile these days. My blood counts are holding steady and I am awash in community.

If you use Facebook, there’s a public photo album for the month of June here (at some point I’ll hopefully be putting the complete albums somewhere that allows hi-res images); you can also find highlights in my photo stream on TwitPic. June 11th is the date of the Relay For Life at CBA, one of the major ones in the Albany area. June 12th is the date I set to get my leukemia survivor tattoo at Tom Spaulding, and June 13th was this year’s capital region pride parade, to which Kate and I were spectators in solidarity. All in all it was a packed weekend, and it set the tone for the month.

I have since learned that tattoos are mostly a test of my tolerance for mess and maintenance. The first two weeks involved a lot of babying and some icky drainage. Well worth it, though.

More recently, the Asylum opened its newly-acquired main space, a massive studio near Washington and McGrath. I got in on the ground floor for the community’s first big project, the Rubber Duck Brigade. Gui has lots of photos posted on Facebook, and Olin’s Mike Maloney is covering the event through its various stages as well. Photos should be making their way to the Asylum website eventually. Basically, we’re going to show up everybody else who attends the Boston fireworks by riding in on behemoth pontoon ducks.

I love everything about this project, even though it’s requiring me to do work I am not good at. To me, it epitomizes the statement “We have lost our minds. Come join us!” which is roughly what Gui said when he and Jenn began Artisan’s Asylum. It’s wacky, it’s a chance to do something with our hands, and it will either succeed spectacularly or fail spectacularly. The most recent reports indicate success is very likely, but either would be fun and interesting.

Those of you who will be in town for the 4th of July and want to see what the fuss is about, the most recent word I know is that we’ll be putting in around 4PM from one of the Harvard/MIT boat launches, alongside Anthony’s Project Best Idea Ever crew. Look for us and I imagine we’ll be hard to miss.

Given that this is in response to something I recently read, let me preface by saying I love my friends for who they are, and that diversity of opinion is a wonderful thing. Nor is it your fault per se that the organizers of causes you endorse use some language to which I might object.

That said, I clench my teeth a little when I read conservative advocacy that uses the phrase “Obamacare”. At first, I couldn’t put my finger on why this sounded so inappropriate, almost pejorative to my ears.

Here’s my take on the matter. I believe it is the duty of opposition movements to win respect for their cause by not lowering the tone of debate–this is what distinguishes a politically serious coalition from a counterculture. You are free to disagree with the terms of the act, free to argue it won’t achieve its ends. Argue even that it costs too much; I disagree with some of the estimates I’ve seen from conservatives, but I’m also very ready to admit how little I know about the numbers.

Not only is Obamacare a silly label, it denigrates the millions of Amerians who helped put President Obama in office precisely so reforms like this one could be passed. HCR is not of, for, and by Obama. His administration put forward an implementation of an idea whose time had come. Of course, health care professionals want to serve human beings with compassion and without qualification. Of course, we want them to do so.

Does this notion imply some degree of socialist leaning? Sure. I would say the same of any form of mandatory insurance, even auto insurance, where the math is different but the result is similar. Anyone who wishes to use the highway system has to buy in, and while getting into accidents raises your premium, it never adds up to what you’d otherwise have to pay if you were unfortunate enough to total somebody’s Bentley.

Life happens. And sometimes it brings expenses that are hard to account for. Our own system of patents and copyrights allows the makers of lifesaving medical technology to all but name their own price for serving us. If we’d tackled that issue some years ago, tackling this one might not have turned into such a pricey proposition. As it stands, a productive member of the workforce has limited options when he suddenly becomes dependent on that technology. I was lucky enough to be employed and have good insurance. I’d need a six-figure salary to make room for my medical expenses if they were out-of-pocket. Under Obama’s legislation, I can afford to turn my attention to other concerns. And that’s my tuppence.

<3 y’all.