"sometimes i miss my sanity" –wedge antilles

beard = levels in wizardry

Obviously a publisher is a business and a business needs to make money, but the idea used to be that you'd have a couple of very successful authors who bring in so much cash that they subsidise the new kid who is building a back catalogue of books that sell okay until they get name recognition and pay for themselves. I was told back then that a couple thousand pounds was very reasonable for a debut novel because you want to get royalties for the sales exceeding your advance and that way the publisher sees you as a profitable investment. The last couple of years I keep hearing about six figure book deals for debut (!) literary fiction (!) novels, what on earth?

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.

The kid was picked up by an ambulance 30 minutes later.

Now as an adult working in security I get SO MANY folks- upper-middle aged mostly- coming to me to 'rat out' people they think are faking it.

I was once sent into a bathroom because a client demanded that the "fucker won't get out, so go drag them out"- I was NEVER going to do that, so I did a wellness check instead. You know who it was? A person recently released from the hospital after a car accident. They had a hole in their skull and major hearing loss. They couldn't answer the owner because they couldn't HEAR the owner.

Another time about a homeless man who got around town by kicking the ground from his wheelchair. "You know he doesn't actually need that thing, his legs work fine, it's just for pity points"- Oh, so he's not paralyzed, his wheelchair is performative? Funny story Dale, I actually know that guy, he was backed over by a truck and has chronic pain from his shattered pelvis. But sure, let's make him stand up and walk everywhere so nobody feels too bad for him and tries to help him or something.

"She doesn't need that scooter, I've seen her get out of it."

"Look how fat he is, because he just rides around and refuses to get up."

"She doesn't really need that cane- she comes here without it all the time"

Abusers and creeps are not some species of especially heinous animal or alien or monster wearing the face of a human. They're people. And you NEED to drill it into your head that they are people because you NEED to remember that people are capable of doingn heinous shit. And you are a person. And your loved ones are people.

Suicidal people will always exist and people who will always be suicidal exist and that is not inherently an issue that needs to be solved. But it becomes an issue when people are forced into it. Currently, suicide prevention involves institutionalizing suicidal people, telling them that they must survive, by any means possible, but so many of them have been told the opposite for their entire lives, implicitly or otherwise. Suicide prevention should involve working to improve society, making it a livable and survivable place for all people. Only then will the autonomy of suicide be achieved. Otherwise, so much of it is social murder.