a touching story and song

I'm so touched by this month's Atlantic article about a breakthrough in cystic fibrosis treatment. 

In the fall of 2019, Trikafta was approved by the FDA just 10 days before a large annual gathering of CF experts in Nashville. Doctors who attended told me the atmosphere was electric. Jenny happened to be there to speak on an unrelated panel, and she remembers seeing the geneticist Francis Collins walk onstage with a guitar. Collins is best known as the longtime director of the National Institutes of Health, where he oversaw the sequencing of the human genome in the ’90s (he has since retired from the NIH). But he had made his name in 1989 as one of the scientists who discovered the gene for cystic fibrosis. 

In those long years when progress was halting, Collins, who is also an amateur musician, wrote a song to inspire a gathering of CF researchers. He sang “Dare to Dream” again that day in Nashville, his baritone raspier with age. When he got to the verse that he had rewritten for this occasion—“That triple treatment has taken 30 years”—cheers broke out in the convention center. In the crowd were people who had waited their whole career, even their whole life, for this moment. We dare to dream, dare to dream. As they swayed to the music, perhaps no one quite understood the magnitude and velocity of the change to come.

It's adorable watching the NIH director singing the song he wrote. I went back and also watched the 2009 version he sang at the 20-year anniversary of isolating the gene, before they found this breakthrough treatment. 

He is very inspiring! Also he's good at enunciating clearly while singing.

books and treks and mortality

I've been confronting my mortality for the past couple years. It started when I saw that according to a census table, I was past the midway point of my life expectancy.

I responded by finding a more granular life-expectancy table. By painstakingly filling out that I've never smoked and I do exercise and numerous other habits, I received a reprieve. The new granular table said that I have one more year before the midpoint. A brief deferment!

Then I was listening to an audiobook which offhandedly mentioned that as we age, it gets harder to learn snowboarding, surfing, and similar sports. It's possible to maintain them if you learn them at a young age, but if you start trying to learn in your 50s or 60s, all the falling and crashing is harder on an older body. The book pointed out that there are people who run marathons in their 80s but it'll be their 14th marathon. No one runs their first marathon in their 80s.

Several times in the past couple years:

Me: I was just thinking about how I'm going to die someday, and -
Aff: [cheerfully] The solution is to stop thinking about it!

I developed an urge to read books about old age and the end of life. My favorite has been "Elderhood" by a doctor who specializes in geriatrics. She pointed out that Western society is filled with ageism, and it affects doctors. If a 20-year-old patient is severely depressed, people would say "But why? She has so much to live for!" and try hard to treat it. If a 87-year-old patient is severely depressed, people may say "That makes sense" and overlook physical reasons like low sodium levels. Scientific data even shows that older people tend to naturally be the happiest demographic on average, but those facts are still overshadowed by a cultural stereotype of old people as cranky and miserable.

I read about the physical process of dying, the last few weeks and days. Apparently people usually sleep more and more. Also, sometimes people prefer to die when they're alone, and they cling to life until all their relatives step out of the room to use the bathroom or eat food, and that's when they slip away. So the whole American fear of "dying alone" as the worst possible outcome is actually what many people choose! Next time someone tries to rebuke me by saying "If you keep this up, you'll die alone", I'm going to reply, "I hope so!"

Besides reading, my other impulse has been to do multi-day treks. Currently I'm enamored with the 3-4 day Quilotoa Loop in Ecuador. It's only 22 miles but involves a lot of uphill and downhill. You walk along a volcano, lake, and canyons. I'm hoping to do it within the next year.

I also want to do another Camino, but that takes more planning.

Me: "I can't wait to do another route of the Camino. Maybe the inland Portuguese route."
Friend: "Were you happy when you did the Camino last year?"
Me: "I was only happy 15 minutes per day. More often, I felt anxious. I was worried about rain, heat, going uphill."
Friend: "Why do you want to do it again, if you weren't all that happy last time?"
Me: "Oh! That is a good question. ... I just do."

Fortunately Aff agrees to go with me on treks. I've asked a few friends, and rarely have I received such immediate, emphatic "no"s.

Now that I've started the trekking habit in my midlife, hopefully I can continue trekking into my elderhood! 

Quilotoa crater lake

no Buddhist McMansions

I'm watching Tsinghua University lectures about Chinese architecture over the past 5000 years.

Me: [to Aff] "One of the professors always looks like he's secretly smiling. He looked really happy in one lecture, then he had a less flattering haircut and was less smiley in the second lecture. Now his hair is great again and he's even wearing a very Chinese style shirt."

Aff: "I hope he didn't go through a breakup during the time of the second lecture."

I'm 20% through the lectures. I learned that Chinese architecture was influenced by Confucian values of balance. 

Yin means shade, and yang means sun. The balance of yin-yang means you want a home that's not too big (too much shade) and not too high up (too much sun). The emperor had enormous public spaces, but his private living quarters were similar size to an average citizen.

the emperor's new dress

 I love this post by talented writer Sarah Miller:

I thought a lot about my lying review of that racist, boring, laughable, pseudo-intellectual movie ["The English Patient"]. I thought about how at the time, I was proud of myself for having the courage to make shit up because I was afraid to disagree with someone I wanted to impress, and also afraid of not making money. [...]

If you write thousands of sentences that have absolutely nothing to do with what you think or feel those sentences are still what you will become. You can turn yourself into another person. I turned myself into another person.

That person was very sure she understood the way the world worked. [...]

I used to think I thought the right way, like, who cares if everyone does bad things, because bad things are just what important people have to do. Who cares if Barack Obama bombs people and doesn’t even try to prosecute bankers, because that’s all just his job, and he loves gay people and yells at bigots and his wife is smart and has great arms. Who cares if Hillary Clinton is best friends with Henry Kissinger, because she is a woman and so am I, and she stands up to men, and isn’t that what feminism is all about, finally getting into the rooms, finally getting to be the one to kill the people who don’t matter? Since my life was a fantasy, I had no trouble inhabiting a larger one.

It often strikes me that it is considered immature to be unable to believe bullshit. [...]

Everyone had agreed to care about this thing, to call it good, to give it nine Academy Awards. But it was just a piece of shit sprinkled with glitter that everyone, including me, agreed to call gold.

Everyone talks about the country falling apart in November 2016, but maybe it fell apart in November 1996, when America went to see The English Patient. What if we had all turned to each other and said, “This garbage is our idea of rave-worthy cinema? Anyone else see a big problem here?”, and then there had been a massive riot?

I remember "The English Patient" when it came out in the 90s. Women raved because the male protagonist sewed the dress of the female protagonist. The dress was torn because he ripped it off her body in a fit of lust / passion. 

Tearing the woman's dress apart does not seem romantic. Why ruin the clothing? It would only take a few more seconds to remove it normally! Of course he should sew the dress he destroyed! Otherwise he gets to just mess it up and then get his rocks off and roll over and fall asleep, and she has to sew the dress back together? 

Sarah Miller is one of my favorite writers. She has many insights about the world, and turns them into clear concise stories.

home alone letter writer

Today I read this advice column letter in the New York Times:

I am 68 and live alone in a nice home in the suburbs. My only child, 40, is happily settled with his fiancée in another city. I always hoped they would come back here to raise a family, and I offered to give them my home if they did. They like the idea and plan to build a new house on the site. Over Christmas, I told them I was excited about their plan and added: “You could build a mother-in-law apartment for me or even a guesthouse.” It’s a large lot. My son burst out laughing and said, “Mom, you wouldn’t live with us.” They assumed I would move into a condo. I was shattered!

The columnist replied:

I don’t think a reasonable person would expect the gift of a home to include your continued residency in it — unless you mentioned that fact.

American society is so different from Chinese expectations! I can only imagine how Chinese netizens would react to a son who wants to take over his mom's house but laughs at the idea of letting her stay in a detached unit on the lot. 

The US has sky-high demands on parents taking care of kids, but nothing in the other direction. If a parent said they wanted to take over their teen's inherited trust fund and then kick the teen out to live on their own, people would be aghast! Yet they don't blink if someone is doing it to their mom instead of their kid. 

American parents invest so much time and money into their children, with little hope of caretaking in their older years. It's interesting.