Life as an Extreme Sport

Rights and Passage

It seems like it must be a passage of adulthood, a rite that no one wants to pass but everyone eventually does, that one of authors becoming people, people flawed and awful. For some of us, that rite of passage is picking up beloved books of childhood comfort and realizing just how horribly racist they are, and that no amount of the warmth from Polgara’s kitchen can change the fundamental bedrock of racism that forms the faults and seams of the stories.

For others, the stories remain beloved comforts, heavy and warm and rich with the scent of a fresh bound book slowly worn by the repeated readings, the track of the digital scrolling past on a thin electronic tether to the most wonderful libraries. For those people, the rite of passage is different, worse and better, because what changes isn’t the story but the author, who reveals that they weren’t the person who wrote the beauty that comforted, consoled, and inspired you. But in some ways, you’re lucky. The text? It no longer belongs to the author; it’s your love that sustains it, that breathes life into it, that forms the bonds between people with that shared passion and love. You can take it and make it what you want and will; you never have to give the author another cent, never have to support them, never have to acknowledge them, and you can still have the beautiful, inspirational people living within the boundaries of that book binding, digital or otherwise.

You might have to let them go; it might be the only way you can handle the taint of the author, to turn away forever. But it’s a choice. You can keep the characters, and get rid of the author. They began living beyond the author when you began reading, when your mind gave them form. They are embodied by your imagination, your passion, your love.

It’s not just gods that are made real by your belief in them.

Hullo

Hi, no, I haven’t used this space much recently, and I’m not sure if I will, but if you’re here, it’s probably because you clicked a Twitter link or did an internet search on my name, and are looking for more information. I’ve got a biosketch and a CV up here, and I have a ko-fi account, for those of you who want to toss a coin to your bioethicist; the tweeting and public outreach is not something I am paid to do, but sharing accurate and non-inflammatory public health/ethics information is something I pretty passionately believe in. So here I am.

Ahoj, Praha!

Really enjoying the Czech Republic so far. Spent a crash course this morning on DuoLingo–something I should have done a week ago–just to get hello, good [time of day], please, and other basics down. I just feel bad when I’m ordering and everyone has to default to Dumb American, ya know?

The language is really pretty. Nick was mentioning yesterday that he has a hard time wrapping his head around it, and I’m not having that issue, which I largely think is because of my time noodling around Hungarian. Some of the consonant pairs–like the one that brings you Rocza–are just comfortably familiar.

The aloha of the language is “ahoj”–and yes, that j is pronounced like a “y.” It’s a very casual hello/goodbye, meant for friends and family, but nonetheless, it amuses me. Talk Like a Pirate Day, every day!

Plus, I just like Europe. I like the cultural foundations, like what you eat for breakfast, or the fact that sparkling water isn’t carbonated to soda pressure. I like how green it is, even in the city center, the age of the cities, the variety of architecture, even the structure of neighborhoods. Mostly, I just feel comfortable here–and so far, “here” is every city I’ve been to, with the possible exception of Dresden.

We won’t have a chance to do much exploring beyond where we’re eating tonight and tomorrow until next week, but that’s okay. The heatwave will be over then, so less chance of OH GOD MELTING, more time for all the photographs…and maybe a try at plein air painting.

Once More, Across the Pond

[Written 2pm CEST Wednesday June 25.]

We are comfortably in our hotel room in Prague. Uneventful flight; I either have the best noise-canceling headphones ever, or the FOUR kids under eight that were sitting directly across from us were really angels in disguise.

We landed around 9:30am local time (3:30am ET), which meant I was still wide awake––insomnia training is good for something! There was a ride waiting for us, and our original hotel… sigh. It was beautiful; old, elegant, owned by the Czech Academy of Science, which is connected to it by a garden.

It also didn’t have an elevator or en suite bathrooms (they were as far from the bedroom as you could get without going downstairs, in that they were NEXT to the stairs and we weren’t), and the path between the bedroom and bathroom was full of multiple level shifts in the floor and wasn’t lit at night. ?

On top of those concerns, there’s a heatwave in Prague right now, and while I wasn’t expecting A/C in an old building, I did at least think there would be fans.

There were no fans. Instead, windows were just open. Which might be okay if you could get a cross-breeze between windows, but there was only one window in our room… and while it was rose- and jasmine-scented when the breeze was blowing when it wasn’t? The smell of recycling and trash, from the trash pile right below our window.

Did I mention ??

So Nick called the organizer he’s been working with, just to see if they had recommendations of where we could stay. While the room was paid for by the conference, we obviously had no expectation of them doing anything, since this was an “our bad” situation–Nick had forgotten to mention accessibility needs, and normally we can make things work, but the health-threatening heat wave kinda creates inflexibility.

Instead, David showed up, asked Nick careful questions about my needs, and his assistant promptly booked us into a hotel across the river, in what appears to be a vibrant part of the city–and then he drove us there!

Our new hotel has also been awesome; the assistant made sure there was an accessible room, and apparently also relayed my needs, so before we arrived the front desk staff massively chilled the room so it would be comfortable for me, and placed a shower seat in the bathroom, “just in case.” They’ve also asked if there’s anything else they can do to help improve accessibility for me, just let them know.

I am just so impressed. I can’t think of the last time I had to do the “oh so hey, broken body here with specific needs” and… had them met. Had them OVER-met. With no fuss or anger or blame or anything other than apologetic “so sorry to put you through this.” It’s so…novel and strange. And I just feel so…welcome!

When CRISPR Evokes Fear “Gene Editing” Doesn’t

I’m seeing this NPR CIRSPR trials article going around, with comments ranging from the relatively mild “here we go” to the more typical doom-and-gloom engineering humans into super-race/extinction/X-men/choose your X-related catastrophe. And while the Editas one (still) concerns me—I don’t think the tech is where it needs to be, and I don’t believe anyone will stand up to the founders of Editas because of who they are–I, overall, am not at all fussed about these trials. Why? Well, take this Penn cancer study. It’s not like this is NEW. The tool, CRISPR, is, but it’s just changing the kind of tool being used for gene editing. We’ve been gene editing for disease treatment for a while now.

For example: on Weds, there was a paper in NEJM using HIV to cure bubble boy syndrome. How? HIV was the gene editing tool. The cure was cool and new, the tool was not.

But because it lentiviral gene therapy, not CRISPR, no one blinked, even though it says “gene therapy” in the very title of the paper.

CRISPR seems to evoke a strange panic with people; fundamentally, people are treating it as if it’s some kind of new thing. It’s not; it’s just upgrading your college student knives to a really nice German set after your first big adult paycheck.

*Content modified from a comment originally published on Damien Williams’ Facebook.