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canes, AI, and libraries

Why does it feel so scary to post here sometimes? It feels way scarier than it used to, the stakes feel really high. Maybe not “high” actually, just completely unknown.

At any rate, a few questions I’ve been asking myself recently.

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Where can I find a good still-in-production cane? I love this book on walking sticks and canes from LMP, but none are widely in production (understandably, this was a speculative brief).

The folding cane by Michael Graves Design comes close but I’ve only been able to find the CVS branded version secondhand on eBay, and the color selection leaves something to be desired.

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How do you factor AI tool costs in to your time-based rates as a contractor? Working with AI makes me more efficient (reducing my billable hours), improves the quality of my work (some might argue that, but I think it’s the case), and costs me hard cash. In theory the answer is just “raise your rates”, but I suspect most clients wouldn’t be able to stomach that. Maybe some would with a detailed policy / explanation, but that’s a lot to ask of most folks. Charge per token? Surely not.

I got talking with Sam about this last night, and then the same topic came up with GC spontaneously this morning. Maybe consider the subscription itself normal tooling overhead, absorb token-based usage up to a particular documented limit, then bill the client for major project-specific token usage. Even that last bit is so fiddly though. Back when we were focused on SB-PH we tended to take on fixed-fee projects, I feel like that’s probably the way for tight-scope, repeatable services.

More thinking to be done here.

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What are some good books about the history of libraries? I’m curious how they evolved from private collections to previously-guaranteed-but-now-under-significant-threat public knowledge resources, and how that evolution could / should / shouldn’t influence future AI regulation. I’d love to read something that also covers the changing role of the librarian over time.

Analogous question: How did it come to be that computer + printer + internet access became a service that libraries are always assumed to offer? In the US, it seems like such a band-aid for the broader problem of internet access having nowhere near the protections that it should. How is it that the landline you’ve barely touched in a decade, if you even still have one, is more heavily protected than the utility you’re all but forced to use to file your taxes? Is there maybe a path forward with this considering the recent election results?

Thanks to @genericbecky.bsky.social for recommending The Library Book by Susan Orlean (and to @christian.bsky.social for relaying the rec!). The Library: A Fragile History also looks promising but sounds like it doesn’t go as deep on the the 20th+ century as I would like.

A post on the road to lupus diagnosis is still forthcoming. It’s almost impossible to write without sounding 100% more woe-is-me than I actually felt at the time, and to communicate the level of internal and external gaslighting involved. “Gaslighting” isn’t quite right though, it’s too strong a term for the usually-unintentional and mundane micro-invalidations. Death, or at least major illness, from a thousand cuts. I’ll think it through.

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storm coming in

Clouds against a grey blue sky

First nor’easter of the year is hitting this weekend. Got me thinking again about the Met Office’s shipping forecast. I’d love an equivalent for my health, extreme functional compression to communicate my daily lupus symptom status. Right now I’m going to be moving a ring between my pinkie and the first knuckle of my middle finger. Pinkie means “decent or better”. Middle finger is everything else.

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Late 30s going on 70

A cloudy sky with a small hole of bright blue

It finally feels like fall here, it was about 48F when I took the kids to school and daycare. Enjoyed getting dressed for that sort of weather, not so much sunscreen and sweat. And my ears don’t hurt in the wind anymore thanks to the hydroxychloroquine, turns out that was Raynaud’s. But the joint pain is much more obvious with the cold. That might improve over time, but this is my now.

Late-30s going on 70. I’ve been taking a lot of comfort in Ursula Le Guin’s writing, as usual, but her writing on aging and the fallibility of the body is particularly resonant.

The pain in my feet, knees, and hips was enough the other day that it suddenly dawned on me. Do I need a cane? Maybe I need a cane. Let’s get a cane. I found a secondhand one online from some estate sale in California and sawed it down to size. I won’t need it often, but there’s something about having something that I picked, that someone else previously found useful, that I modified just for me, that makes life-changing pain a little more visible when it’s not that obvious, pain that I can’t explain to acquaintances, friends, strangers, without bursting in to tears. Having something to hold, to lean on, to signify “hey, maybe let me take that bus seat if that’s alright”, is really comforting.

I’m hoping that visual signifiers will also help with the kids. That’s the hardest, most sorrowful part. Reminding him that I have “inside boo-boos” when he wants to play bath monsters, “I know mommy”, running to ask daddy instead. Her looking at me carefully with her big blue eyes saying “oo okayee?” when I wince after she jumps in to my lap. Yes, I’m okay my love. I’m not, but I’m okay enough.

My dad has dealt with chronic pain for years. I had no idea how much it drains the soul. I’m sorry.

It’s not all bad. Like I said, my ears don’t hurt in the cold now. Though everything else does, how’s that for a tradeoff. I can have dairy again, the lactose intolerance was a part of it all. And my highest and lowest notes are back with zero effort on my part, which was truly a shock.

So many things to be thankful for (insurance, savings, time, Sam, friends, family, neighbors, modern medicine, our walkable neighborhood, a good rheumatologist). And Carole King. How had I not listened to “Tapestry” in full before. What an unbelievable album. I put it on in a particularly low moment after I stumbled across a video of Aretha Franklin singing “(You Make Me Feel Like) A Natural Woman” at the 38th Kennedy Center Honors gala. Every song on there is fantastic, but I was full of tears after the first line of “Beautiful”.

“You got to get up every morning with a smile on your face / and show the world all the love in your heart.”

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One answer, many questions

Another quick update: I’ve been diagnosed definitively with lupus. I’d been toeing that line for a long time, have had symptoms related to it for at least 15 years, but things properly went wrong starting around the middle of last year and a recent biopsy made it definitive.

Anyways, send me all of your hot-weather recommendations for long sleeves and pants that don’t make me feel like a boil-in-a-bag meal. And hats, all the hats. Did Carmen Sandiego have lupus?

(Genuinely, related to the clothing recommendation solicitation: I really appreciate the emails I get about this blog, truly, and I’m sincere when I say “send me x”. But I should say now, I’m not great on quick replies at the moment, haven’t been for some time. It’s hard to find the words. But thank you.)

The first week after diagnosis was the honeymoon phase, relief at knowing. Now I’m in the much lower “what now, what next” phase. The diagnosis road has been very long, and honestly there’s still a long way to go in terms of finding the right cocktail of drugs to keep flare ups and progression at bay. Reading other folks’ stories has been really helpful though, so I’ll try to share it at some point.

If you’ve wondered why the long time between posts, here’s the answer.