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

At my parents’ request I’m going through some old papers looking for keepsakes. A lot of it was psychometric test results and school reports. Then there were some essays and dictated stories (and even a couple of picture books).

Most of the latter has always embarrassed me to look back on. I’m not sure why. Partly it’s the stilted language, the misuse of adult phrases, but for my age it ought to be impressive that I was even trying for such advanced semantics, that I knew how to use even a fraction of those big words correctly.

There’s this autobiographical essay, for instance, from age 13-and-change. Taking the form of a field report by an alien sociologist, it contains unqualified self-psychoanalysis, my physical stats in S.I. units, census figures in scientific notation (“6E+09 H. Sapiens living on a planet better suited to less than 3E+09″), and a quotation from Vonnegut. It’s hopelessly emo (although the phrase “emo” hadn’t been invented yet to describe such catharsis) and shows reckless lack of integrity in its third-person perspective.

Who but an Aspie could have written that?

But as much as I may take chagrin at seeing I wasn’t always so well-polished in my writing skills, there are some surprising gems in these old materials that make me smile a little. I’d completely forgotten about the time I was published in the Times Union with my little four-liner poem about baseball (of all things!).

And then, there’s “The Gift”. From the handwriting I’m guessing I was 9 or so when I wrote it. Constrained by the challenge (at the time) of writing in verse at all, I somehow managed to hold in check my demented grasp of 16-letter words and write something that presaged my later knack for balancing diction:

The most precious gift
I am told
Is all the love
The heart can hold
I give it to you;
You give it to me–
There’s enough for the world
And the gift is free
Will you take my love
More precious than gold?
It’s the finest gift
That the heart can hold.

I dedicated that one to Mom. I still do. I think it was pretty neat. It espouses one of the few values from my childhood that I still hold to. Connectedness means everything to me. I would have had trouble imagining, when I was growing up, that I would one day find myself enmeshed in such a tight, wondrous weave of friends, lovers, colleagues, and family, and that those connections would make up so much of what I am. It’s something akin to Pinocchio’s ecstatic cry of, “I’m a real boy!”

So apart from all the statistics, and all the tests with funny names, mostly what I’m getting from the old papers is an answer to the dichotomy often implicit in discussions of AS: is it curable? Can my son become normal?

Yes and no. For starters, introversion and extroversion are not changeable. Being a “space cadet” or a “pack-rat” or a “braniac” never fully goes away. But none of these are what AS is, they’re just part of what it does. You can, however, become yourself version 2–that is to say, your greatest attributes, but more so, and your lesser attributes compensated, sometimes morphed beyond recognition.

AS is not a definition of a life, it’s a definition of a start (or false start), and a goal. The start is ineptitude and disconnection; the goal is to be loved, to be connected, to be appreciated. (The popular terminology here is “mainstreaming”, but that’s a loaded word and should not be confused for an end goal. To me, mainstreaming has always hinted at a second meaning: that your goal is to ingratiate yourself with the popular and shed all outward eccentricities. To a sociopath this might be a survival goal, but to an Aspie it constitutes complete self-reversal and is impossible. Moreover, to be “mainstream” among adolescent Americans is to be a vicious, callous, self-important little asshole.) You want quality over quantity of connections. Ultimately, you want the freedom to be yourself, while relating to others who are themselves.

This radical freedom is within the grasp of Aspies, perhaps more so than for others. For me, the final transformative impact of otherness was to be capable simultaneously of brushing off many kinds of emotional hurt, while evolving a profound awareness, humility and sensitivity to the feelings of others.

To quote The Avett Brothers, because I can:

I wanna have pride
Like my mother has
And not like the kind in the Bible that turns you bad
I wanna have friends
That I can trust
Who love me for the man I’ve become, not the man that I was

Working at Yellowbook has taught me the importance of a good photoshop. Normally I don’t pay much heed to admonitions that “you have to visualize success”, but I have found that I can visualize it real good if I make a sufficiently epic picture using the web and/or MS Paint.

Shopped version of a classic XKCD. Yay CC licensing!

Guess what I’m working on today.

This is mostly for mom and sis, who I thought would get a kick out of it now that we’re linked on Facebook. But it’s for the non-Jewish netizens too, and I’ll be coming back later hopefully with a play-by-play explanation to both sides. The diverting item in question can be found here; it’s basically a retelling of the Passover story and some of the ceremonial elements of the Seder.

That is the sound of me diving into my resolutions headfirst.

Actually, it’s a little intimidating. On the strength of recommendation, convenience and a really impressive first session, I have agreed to a minor gut-punch in the bank account. I can take it, but I have to admit, this is the first time probably in my adult life that I’ve experienced genuine sticker shock. In a nation that works and eats itself to death, learning to reverse the damage and live a healthy lifestyle carries a luxury price tag. I couldn’t do this on less than a hacker’s salary.

The good news is, I wasn’t doing anything with my weeknights, so it was a snap to schedule.

You might say that, rather than making my schedule busier, regular training sessions mean that I now have a schedule. I have something that justifies reacquainting myself with Google Calendar. This can only be to my benefit, because when scheduling is free-form, I never feel compelled to utilize the time that I have.

Which leads to the second point. I got a book in the mail this week, in time for the long long ride to D.C. It’s… a rather famous book, particularly among the sort of people who know what “lifehacking” is. Particularly, people for whom the pursuit of efficiency and productivity is another form of geekdom, like software or hardware.

I don’t understand these people, myself. But I do envy their success, and if I could emulate it, I would. Ten years ago I couldn’t have. Five years ago I tried, with mixed results, but never came up with anything that was sustainable in the absense of constant coaching. A few things have changed. One is that I have this book. Another is that I have no homework, no coursework and thus no real excuses for feeling rushed all the time. Another, and this is where I’m really holding out hope, is that the system of the world is evolving towards my doorstep.

How so? Well, consider my routine. I wake up. I shower, take my meds, possibly grab something to eat, take a quick look online and then close the computer to bring it to work. I sit in traffic for 40-60 minutes, stereo cranked and singing as enthusiastically as I can to keep from getting annoyed at the other drivers. I run in from the parking lot, feeling my skin dry with each second exposed.

I get inside and depending on how I’m feeling, I make some coffee on the Keurig. I settle into work, check my various sites again as outlook fetches my mail, and do whatever needs doing before the morning scrum. From there, I work more or less uninterrupted until I either run out of steam at 430, or realize at 530 that the rest of the team left while I was absorbed in something, and that I can’t make more headway without them.

Either way, I’m pretty wiped when I get home, and maintaining or servicing any old pencil-and-paper todo list seems too much to process. It takes a little energy even to hop back on the computer, but I usually accomplish it somehow. It’s here that things like specialized productivity webapps and a heavily automated Gmail inbox come into play. And it’s here that, with the energy gained from a favorable turn of season and a more active lifestyle, I aim to establish my beachhead.

The web buzzes constantly, perhaps even excessively, with the pet projects and suggestions of productivity bloggers. And it is host to a broader range of useful services than ever. Someone must have told them there was an untapped demographic of web-savvy shut-ins. People who, like myself, have a hard time seeing their way past a measly meal journal, no matter how fiercely independent they may otherwise be; but give them something like Vitabot, and suddenly the whole thing looks simple and friendly, and compliance and retention rates go through the roof.

I’m losing my train of thought a little between tiredness, the DVD menu track looping and somebody talking. I think where I was going with this, though, was that there’s infrastucture in place to be tapped. I once seriously thought about trying to create my “system”, whatever that might be, in code. This, by the way, is one of my primary failings as a computer person. It is called THE LUDICROUS TEMPTATION TO REINVENT THE WHEEL.

Not that I actually fell prey to it, but it was there. It hit someone else first, back when it was just the temptation to invent the wheel, and that person was more organized and determined than I am. Now there’s all kinds of wheels out there to be found and used to advantage. But it wouldn’t get anywhere without motivation and a little insight on how these things work (for me and in general). I’m hoping to get some of that insight from reading (the rest has to come from experience). Motivation is the last puzzle piece, and time will tell if I can muster enough of that by myself. I’m not so proud as to assume so, but it’s in my nature to hold out hope, because I don’t like to feel beholden to more people than necessary.

Huh. I guess I really am changing habits. It’s eleven and I feel exhausted.