Lack of Life

in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.

people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.

My ward is the respiratory ward - CF is one of the things we specialize in.

Since this med came out we haven't had a SINGLE CF admission to the ward

There used to always be a CF patient spending a couple of months with us at a time

There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)

There's a set of the local frequent flyers that we all know so well

Except

No we don't

On the CF specialist ward (with reasonable staff turnover)

Half the staff have probably never even seen a CF patient

Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.

That is per month with the most common coupon people are likely to use.

But don't worry, there's grants and patient assistance programs you can apply for. 🤞🫠 Most people in high income countries like the USA can get it "covered" through insurance for fewer thousands of dollars. Or even less if your insurance is good or the manufacturer likes how poor and/or on Medicaid you are! A good social worker will help you with the process, and make sure your yearly reapplications and PAs are done a little early so they have time to think about it before you run out. Jesus Christ.

"Warning

1. The FBI's Famous Cases & Criminals archive (fbi.gov/history/famous-cases) has detailed breakdowns of real fraud cases, Ponzi schemes, and confidence operations. The language they use is clinical and precise, which is perfect for getting the procedural details right.

2. The FTC Consumer Sentinel Network publishes annual reports on the most common fraud tactics in the US. Great for understanding how modern scams actually work and what makes people fall for them.

3. The Smithsonian's American Art Museum has a free digital collection of forgery case studies. If your character forges documents or art, this is gold.

4. Court Listener (courtlistener.com) is a free legal database where you can read actual court transcripts from fraud trials. Want to know how a real con artist talks under oath? This is where you find out.

5. The Internet Archive's collection of old newspaper crime sections. Search for "confidence man" or "swindle" in papers from the 1920s through 1960s and you'll find incredible real stories that would feel too dramatic for fiction.

Bonus: The Psychology of Fraud section on the Association for Psychological Science website has accessible articles about why people trust, how deception works cognitively, and what makes someone a convincing liar. Essential reading if you want your con artist characters to feel psychologically real.

There's a lot of confusion about different "poxes" in this post (which wasn't my intention, and now I feel bad), so here's a general overview (also, obligatory apology for messiness, this was written at like 1 AM):

Smallpox:

Smallpox, caused by variola virus, was a massive problem historically. It existed in the Western hemisphere for thousands of years (genetic evidence of smallpox has been found in Egyptian mummies from ≈1500 BCE, but it was probably around long before then), and it was introduced to the New World during the Columbian exchange, which had devastating consequences for indigenous populations (which were already suffering from colonialist violence, which made epidemics much worse than they already would've been). Historically, smallpox had a case fatality rate between 30-50%, and survivors were often left disfigured or permanently disabled (you've probably seen pictures of smallpox scars, but smallpox can also cause blindness and other complications). Importantly, smallpox only affects humans—it has no animal hosts—which is why it's one of the few infectious diseases to have been completely eradicated. As of May 8, 1980, it officially no longer exists outside of certain designated American and Russian laboratories. (There are, however, concerns that it could be used as a bioweapon, which is why the government still stockpiles smallpox vaccines and antivirals. I wrote my bioethics term paper on this exact issue, and incidentally, it's one of the major reasons why I believe that STEM majors should take ethics courses!)

There were two strains of variola virus: variola major and variola minor. Variola major was much more dangerous, with a much higher mortality rate; variola minor typically didn't cause severe disease. Fortunately, infection with one strain conferred immunity against the other. Both strains are now eradicated. (People sometimes confuse variola minor with other viruses like cowpox and horsepox, but they're different things.)

There were four clinical forms of smallpox: ordinary (classic smallpox, associated with the rash you usually see in pictures), modified (less severe, often occurred in vaccinated people who got infected anyway), malignant (caused a flat rash instead of the usual pustules, associated with immune dysfunction, almost always fatal), and hemorrhagic (caused severe bleeding, and also near-universally fatal.) All of the non-ordinary forms could be difficult to diagnose because they looked so different from typical smallpox. The less serious "modified" form was often confused with chickenpox, and the hemorrhagic form was sometimes assumed to be a completely different disease. Occasionally, historical sources will refer to hemorrhagic smallpox as "black pox," with or without an understanding that it's caused by the same virus as ordinary smallpox.

Other relevant viruses:

Cowpox, caused by cowpox virus (an orthopoxvirus similar to smallpox) causes mild disease in cows, humans, and several other animals. Infection with cowpox virus confers immunity to variola—Edward Jenner noticed this relationship and used material from cowpox lesions to inoculate people against smallpox.

Vaccinia virus, another orthopoxvirus, is the source of the modern smallpox vaccine. It's closely related to both cowpox and horsepox (weirdly, it's actually closer to horsepox), but it's distinct enough to be its own species. Infection usually causes mild symptoms, and, of course, confers immunity to smallpox.

Chickenpox is an entirely different thing. It's caused by the varicella-zoster virus, which is a herpesvirus, not a poxvirus at all! Infection with varicella-zoster does not confer immunity to smallpox or any other poxvirus—chickenpox is from a totally different family.

So why are the names so weird and confusing? Why is everything about all of this so weird and confusing?

There are multiple reasons for this, so bear with me.

Historically, a "pox" was any disease that caused a bumpy rash of pustles/blisters. Chickenpox, smallpox, and the other "poxes" all cause superficially similar rashes—thus the similar names. (Even though we know now that chickenpox comes from a completely different family, this wouldn't have been apparent before the dawn of modern medicine.)

Smallpox was given that name to differentiate it from syphilis, which was known as the "great pox" when it first appeared in Europe. (Fun[?] microbiology fact: There are debates about the origins of syphilis, but the most common theory holds that it originated in the New World, and Christopher Columbus brought it back to Spain. In that way, it's kind of the inverse of smallpox.) Historically, smallpox was also known by a variety of other names in different European, Asian, and African cultures. Again, this gets murky, because historical physicians sometimes struggled to distinguish between similar-looking-but-different diseases.

Other poxviruses are often named after the animals in which they were first identified. This is not a hard-and-fast rule, though, and it can sometimes be misleading (for example, monkeypox virus was first discovered in laboratory monkeys, but it more often affects rodents and other small mammals. The disease formerly known as "monkeypox" was recently renamed "mpox" because the name wasn't accurate.) Also, some poxviruses aren't named after animals at all! It's a weird and inconsistent system (but a lot of virus names are kinda weird and inconsistent).

Related to the above: We don't even know where the name "chickenpox" comes from. I mean, we know it was called a "pox" because it causes a pox-y rash, but we don't know where the "chicken" part originated. There are multiple theories about this, none of which are definitive. The disease itself has nothing to do with chickens.

Basically, a lot of the weirdness is a result of historical naming practices—people identified and named these diseases before modern virology existed, and those names stuck, so now we have similar names for superficially-similar-but-ultimately-different viruses, and names whose origins have been completely lost to time. Later, virologists muddied the waters further by naming newly-discovered poxviruses after the animals in which they were first seen, even when these animals aren't natural hosts or reservoirs of those viruses. It's a mess! And, again, all of this is complicated by the fact that some of these diseases were very hard to diagnose (or distinguish from one another) before modern medicine existed. Now, we can sequence viral DNA and figure out what's actually going on—which viruses caused which symptoms, whether those viruses were closely related, and whether being infected with one disease conferred immunity to another—but historical doctors and scientists didn't have those tools, so they were doing they best they could with very limited information, and that led to a lot of weirdness in terms of how these viruses were named and classified. Our current system inherited some of that weirdness, so here we are.

TL;DR: Poxvirus names are messy. Smallpox is caused by variola virus, which has two strains: variola major (the more severe one) and variola minor (less severe). Cowpox and vaccinia are different viruses in the same family, and being infected with one of them confers immunity to smallpox. Chickenpox isn't a poxvirus at all, but a herpesvirus—it just happens to cause a pockmark-y rash that looks superficially similar to smallpox pustules (and mild forms of smallpox were historically confused with chickenpox).

(P.S. none of this is super relevant to the average person, so don't feel bad if you didn't know any of it. Unless you are a history major inventing new conspiracies about smallpox, in which case you definitely should feel bad.)

Sources & further reading under the cut!

It’s clear that they have been very close for years, with Hal’s kids even callung Bolaire “Uncle Bolaire”. This is someone Hal has trusted implicitly. Hal killed a man and put Bolaire onto an enemy to possess them. He has been unsettled – by the revelation of Bolaire’s nature and the enmity between Thjazi and Bolaire – but it didn’t fundamentally change things until now.

And it chamged things because Hal walked in to see Bolaire possessing a friend, an employee, a man for whom Hal was responsible and to whom Hal had offered sanctuary. Hal’s anger and worry in that moment were completely natural, and I think it altered how Hal saw Bolaire.

That doesn’t necessarily reflect well on Hal. Up until now, the people Bolaire was possessing were anonymous or enemies. Now that it’s a friend, the implications of Bolaire casually considering hinself entitled to do this to whomever he likes, whenever he likes hit home. And I think the fact that Bolaire is wearing Misha through the rest of the conversation strongly affects how Hal is responding to him. I think he’s starting to realize why Thjazi regarded Bolaire the way he did.

It’s not that Hal stopped seeing Bolaire as a person. It’s that, for the first time, the person Bolaire was wearing was a person to Hal.

To me as a viewer, it also further highlighted a element that’s already been shown: Bolaire is a sadist. We’ve seen it in how he taunts the people he possesses, and in his focus on spells that distort people’s minds, but in this episode we saw how easy it was for him to make it not unpleasant for his hosts to be worn, which made it stand out all the more that he has been choosing to torture them for no reason other than personal enjoyment. (It’s not yet clear to me whether being worn by Bolaire inherently kills his hosts, or if it’s because of his neglect of the bodies; either is possible.)

You opt out of personhood and claim you are a “thing” and a “story.”

You insist this to someone speaking to you with warmth and care and connection. You can’t be a person. You are a thing.

But you hate the man who did not treat you like a person. You carry seething anger toward the one who took you at your word and used you as an object.

But you also use people as objects. You keep them as puppets and bleed them dry and cast them aside when you don’t need them, sometimes killing them in horrific ways.

You do it not for a grand cause or bettering the world. You do it for yourself. Avoiding icky things like eating. Gathering your artifacts. Watching your plays. Having coffee.

You love your sister. You missed your sister. She’s in a box. She’s right there.

You don’t open the box. You don’t study it, you don’t attempt to connect with her. “Extra wigs: Maybe Lice.” And you don’t have to deal with it anymore. There's no time.

You don't make time.

She gets out of the box. You say you’ve been looking for your other siblings. She doesn’t believe you. She’s been in a theater in a box that you wouldn’t open.

The Pridesires have a happier reunion than you do. You want their reunion to be yours. You think it’s a better story.

But it doesn't fit. Because it's characters who make stories. Stories are built on the actions of characters. Teor crossed the continent for his sibling. Teor fought and bled for his sibling. Teor died in the dark side-by-side with his sibling. That is Teor Pridesire's character.

And your sister has been in a box.

Extra wigs. Maybe lice.

And now you've lost everything. It's Thjazi's fault. (You took the Pariah Blades. You decided to move everything and make a clusterfuck of the Lloy Wing. You employed interns to make this happen and told them all to make a mess. You left your sister in a box extra wigs maybe lice.)

Maybe you aren't a person, but you aren't a story either.

Stories have endings.

You are a character. The story is being told.

Jacey Gailliard as The Sugarplum Fairy