Fantasy uses the trope of a line of desolation & destruction slowly, inexorably advancing across the land, killing whatever it touches. Steven King’s The Mist. Miyazaki’s Sea of Corruption in Nausicaä of the Valley of the Wind. The Nothing in Ende’s The Neverending Story.
I have been diagnosed with Parkinson’s. Parkinson’s is like that advancing line of destruction, but operating on the brain. Alpha-synuclein (a protein) misfolds and, a little like prions, the misfolded proteins convince normally folded proteins to join the dark side. (This stuff is all so unspeakably cool if only it wasn’t happening to people.)
The proximate cause for this announcement is all the questions I’ve gotten from folks watching Still Burning & seeing my hand shake. By the time tremors appear, that line of misfolding has progressed far enough to destroy the 60-80% of the substantia nigra. The substantia nigra creates the dopamine that helps regulate movement (not the dopamine that used to form memories—I told you this shit was cool!)
Feelings
Not gonna lie—this has been an emotional shock for me. I’ve tried to figure out why it’s been so hard. I just turned 65 & I’ve been keenly aware of the advance of time for a while. I think the disturbing aspect of my new situation is that my best case scenario for aging just got a lot worse. My 90-year-old ex-father-in-law is still sharp & reasonably mobile. I comforted myself that I might grow old like that.
Now…not gonna happen. Over the next 5-15 years the tremors will worsen & spread (just my left forearm & thigh at the moment). Then my balance will go, followed by, well, it gets worse. Look it up if you want the details.
I call it the time value of time. If I can do something this year it’s more valuable to me than doing the same thing next year & way more valuable than doing it in 5 years.
The expectation of increasing limitations has got me shifting my personal & business priorities. It’s the time value of time. If I can do something joyous this year it’s more valuable to me than doing the same thing next year & way more valuable than doing it in 5 years.
Business
Part of me wishes I could just say to hell with it & retire. I have a copy of Pauling’s General Chemistry I’ve been meaning to plow through, then Alberts’ Biochemistry of the Cell. I want to use the tools I’ve always used to stare this thing in the face.
I can’t afford to stop my business. I need to make as much progress towards financial security as I can as quickly as possible. However, I won’t earn at the expense of enjoying my best, most mobile years. Offer me $100m/year for 3 years of 60-hour days and I’ll just laugh. Go ahead, try it. In practice I’ll either get lucky or I’ll muddle through. But I sure as hell won’t do something I don’t want to do in exchange for distant futures.
(If you were thinking of booking me for coaching, consulting, or a talk for your team, might I suggest you contact my business manager sooner rather than later?)
Next?
I see no reason to waver from my mission of helping geeks feel safe in the world. I’m certainly going to keep coding interesting projects. Art & music are going to get more difficult but I have some ideas. Thinkies are taking on a life of their own. This newsletter will still be mostly on topic with occasional excursions because I have fewer fucks to give. Other than that, we’ll just see.
I’ll leave you with this poetic summary of the situation.
F*ck Parkinson's!
I am sorry. This must be really hard.
"I see no reason to waver from my mission of helping geeks feel safe in the world." Such a beautiful line about purpose. It seems from the outside like you understand eudaimonia. Living a life of purpose can be deeply rewarding, and it is delightful to see you make decisions focused on achieving your personal purpose.
For the past 28 months, I have been dealing with a fungal brain infection, Curvularia meningitis. I probably got it by bringing a little bit of Curvularia fungus from my outdoor hikes into my brain surgery, perhaps in earwax, since I washed my entire body twice with antibacterial soap before the surgery. It was a mystery to find. It caused "about ten" strokes, which, for a while, left me unable to move. Surprisingly, unlike many stroke patients, I have had no cognitive impairment. After two years, I can stand, walk short distances with a rolling walker, am on a clinical trial to improve my left side activation, and am making plans to go back to work. Lately, since December, I have been doing practice projects with my AI buddy. I love it. It has made programming joyful again, and I've done workable MVPs for a personal information manager, equipment manager for homeowners, an heirloom giveaway app for someone dealing with a large number of paintings to give from an estate, tic-tac-toe using minimax or various learning methods (not gonna lie, the desire to do that has been on a back burner for almost 50 years), weather station data recording/visualization for my weather station, and a digital orrery for viewing stars/planets/satellites. I have done this with PHP, Python, Java, Spring, Node, exploring minimal use of external libraries or relying on any that seemed worth the effort. None of it is perfect. The AI is a bit stupid, but earnest in its attempts. It feels like a junior developer who does only what I tell them, so I must tell them the right goals and constraints. It is a joy, and I am looking forward to getting back to work.
Having purpose is joyful. I hope you continue to find your joy regardless of what one mentor calls "the stupid weather of what happens to you."
I wish you the best.