Me an' Algernon

Originally published May 20, 2015. Since then my cognitive function has made a fairly complete comeback, well except accounting for normal aging. I was reminded of this essay by my experience with augmented coding. That “normal aging” stuff left me without the patience to get set up for coding. With the genie, though, I’m happy to dive into most any project. It’s like wearing an exoskeleton but for my brain. The point remains—don’t take cognition for granted.

If you’re augmented coding & you want my personal real-time reflections on the fast changing landscape, here’s 40% off the first year. Offer good for one week from the publication date.

When I was about 10 years old I read Flowers for Algernon, the story of a mentally challenged man who is subjected to an IQ-increasing treatment. The catch is [spoiler alert] that the treatment only works temporarily. The story is written as a diary, with spelling and vocabulary tracking his changing mental abilities. As a child, I loved being smart, knowing things, understanding things. The story was exciting because I could see how much smarter I was going to be and I could see all the new ways I could think and the worlds that thinking would open up.

When I re-read Flowers for Algernon recently I was just sad. The second half of the story, where his mind is going away, is just brutal, especially when he can remember how smart he was but knows it's gone for good.

I'm going through something eerily similar.

The Symptoms

Over the past 5-7 years I've noticed a cluster of neurological symptoms—serious short-term memory loss, desire for social isolation, face blindness (seeing someone I know quite well but not having any sense of recognition), inability to deal with complexity, and social disinhibition (pissing people off unnecessarily and not being able to understand what I did wrong). These symptoms affect my coding and my relationships.

The Diagnosis

After years of waffling and knowing something was up and watching it get worse I finally went to the Mayo Clinic (in network, yeah!) to get a complete workup. After being poked, prodded, scanned, and bled I got good-ish news: it's none of the fatal stuff, no tumor, no fronto-temporal dementia. For reasons no one understands, 20% of the people who present with early front-temporal dementia symptoms never progress. I seem to be in that camp—no nasty mutations, no visible brain atrophy. I have to get checked annually, but this is my new normal.

I regret that I couldn't have brought my forty-year-old brain to Facebook. I could have done some shit here. On the other hand, I was a self-centered, manipulative bastard so I guess it's all tradeoffs.

The Road Ahead

The road ahead is uncertain. The cause and treatment of front-temporal phenocopy (i.e. "looks like but isn't") is unknown territory. As much as we've collectively learned about medicine, it's humbling (and a little frustrating) to be met with shrugs, especially when the condition threatens my livelihood and identity. One theory is that this is the long-run result of PTSD, which I qualify for. Addressing that is painful, lengthy, expensive, and uncertain. Southern Oregon is not exactly bristling with expert practitioners, either, so for the moment I'm just doing my best with what I have left. [ed: turns out the problem was just horrible relationship stress]

Why Share This?

Why write and publish something so personal and painful? Because one-in-I-don't-know-how-many of you are struggling with something. I hope you'll get help. I'm not "better", and I had a couple of really panicky months while results were trickling in, but I'm better off knowing. I can adapt my work. I can be patient with other people who are reacting to my additional weirdness. I really miss programming at a high level, but maybe I'll claw it back [ed: he does, thanks to the genie]. I've already done so once, but that's a story for another day.

Fortunately for me, young engineers are failing to invent new young-engineer mistakes. I can keep telling them whatever I did to overcome whatever they're doing back when I was doing it. Coaching FTW.

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Update: The Long, Slow Slide

A follow-up comment from the original post:

I need to get this off my chest and I don't know a more private place to do it. When I got back from Mayo I was relieved. Okay, I was forcibly shifted from fourth gear into third, but, in spite of the screaming engine and diminished velocity, I could still make progress. This is my new normal.

Today, for the second time in a week, I woke up and thought it was a day later than it actually was. I've made this mistake once or twice in thirty years, so this seems like a big change. On top of that I've been trying to code up one of our ninja questions (binary tree->doubly linked list) and barely making progress in hours of work.

Now I need to confront the "long, slow slide" normal. I was panicked, which is why I'm writing. Now I'm just sad and scared.

But Then...

And then I slow down and think about the programming problem a little and the whole thing works perfectly the first time. Plus ça change...

Looking back, this essay describes a terrifying episode. I’ve always identified with my thinking—I have value because I’m smart. Turns out, as with all attachment, this is a mistake. Peace, y’all.