Dying without self-pity at age 39

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“The Bright Hour: A Memoir of Living and Dying” was published posthumously by Nina Riggs, a woman who died at 39. Her genetic legacy included writing talent:

My great-grandparents on my dad’s side are Emersons, and [Ralph Waldo Emerson] is my great-great-great grandfather.

It also included what can only be called “white privilege,” e.g., the closely-knit extended family of aunts, uncles, and cousins who’d built successful lives, the multi-million dollar family beachfront retreat on Cape Cod, etc. But the heritage is not all positive:

“My paternal grandfather had breast cancer.” That tends to make whoever is charting my medical history look up. “He had a radical mastectomy in the 1970s. And his sister had it, too—she died in her fifties. And one of his nieces. And his daughter—my aunt.” I’m sitting in the genetic counselor’s office as she madly sketches out my family tree on a sheet of paper. There are squares and circles, the cancer victims marked with X’s. Lots of X’s. On my mom’s side: cancer in both her parents, although not breast. An early melanoma in her sister. And less than six months after this conversation, my mom herself will be dead from a blood cancer called multiple myeloma.

Her son also carries some unfortunate genes:

“I really wish I didn’t have to say this, so try not to freak out.” “Okay,” I say again. “I think Freddy has developed diabetes.” John has been a type-one diabetic for nearly twenty years. They said it’s not genetic. . . . “Okay.” I absolutely cannot think of one other thing to say. “I noticed he was drinking a lot from the water fountain at the library, and it reminded me of when I was diagnosed. So I tested his blood sugar on my meter. It’s off the charts.”

If you want to know how a nation can spend nearly 20 percent of its GDP on health care…

First ultrasound ever: I’m sixteen weeks pregnant. The darkened room, John standing at my side. We’re watching the tech—then a doctor who enters from another room, then another doctor—wade again and again into the ocean of my belly, find our growing boy there—his spine curving like driftwood, his thunderous heart. It’s the strangest thing we’ve ever seen. We can’t stop watching the screen/ ocean. Him. But they’re taking too many pictures. Too many measurements. His feet. His legs. His brain. His heart. His feet again. No one is talking at all, until suddenly someone says, “Well, I guess by now you know something is not quite right.”

Talipes equinovarus, they tell us after the scan—club foot.

Later at home, John bans me from obsessing on the Internet, but agrees to read me a list of people he finds born with club feet. It turns out it’s not just obscure, misanthropic rulers. There are athletes on the list: Troy Aikman. Kristi Yamaguchi. Mia Hamm. Freddy Sanchez—who won the batting title in 2006 for John’s hometown team, the Pittsburgh Pirates, and for whom the shapes in the ultrasound-verse will soon be named. Eight years later—leg casts, orthotic brace, surgery—we watch him round the bases, slide into third.

[Regarding the author’s mother] Eight years of cancer. They told her she had five years when she was first diagnosed. New drugs keep coming though, and some of them have worked—for a time. A stem cell transplant. Chemo. She got to see my brother get married and watch my kids grow. Multiple hospitalizations, endless courses of steroids, blood and platelet transfusions, five bone marrow biopsies, daily debilitating nausea and diarrhea, three failed clinical trials. She’s been keeping track: five days of not feeling well to every two where she’s basically okay.

Those of us whose health problems are minor are a significant annoyance:

My friend Ginny who lives down in Charleston has the same kind of breast cancer as I do, and we like to text each other with ideas for a line of morbid prefab cancer patient thank-you cards to real and imaginary people that Ginny calls the “casserole bitches.” She’s a trust and estates lawyer, so she’s an expert in casserole bitches and their eyelash batting.

I text Ginny: “You are fully entitled to slap the next person who tells you that God only gives us what we can handle.”

One day Ginny texts: “Here’s a new card for our collection [thank-you cards for helpful female friends and neighbors]: Thanks so much for coming to visit and fucking my husband. I needed a divorce to keep my mind off cancer.” The visitor in question is one of her close friends from college who has come to help take care of her during chemo. A new level of casserole bitch. She catches them in the living room one night when she gets up to get a glass of water. Ginny goes into lawyer-warrior mode. She makes them sign affidavits before they even get up from the fold-out sofa. [reference: South Carolina family law]

[after the author’s mother dies from her cancer] Ginny writes: “It’s such bullshit that there are plenty of Joan Crawfords and assholes like my husband running around among us and your mom is not.”

On being a dying parent:

Downstairs, the boys gaze at a screen on the old futon in the playroom. We will figure out what to do about them soon enough. They probably already know what’s up and are waiting for us to figure out how to say it. Their very existence is the one dark piece I cannot get right within all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.

A retired rabbi—the friend of a friend—writes me an email out of the blue about how he lost his mother when he was nine years old. In the message, he lists all the things he remembers about his mom and all the ways she remains in his life: her favorite flower, the books she read him, her sense of humor. “She is far from a hole in my life. She is an enormous presence that can never be replaced.” His words are a gift that I pull out some nights and let swirl through the room, brush over my skin like a tincture.

In the book, but off-topic: Don’t open your home to pit bull mixes:

Charlie and Amelia have just arrived in town. They’ve decided to escape the Western Mass winter and come live down here for a little while at my dad’s house while Charlie works on finishing his dissertation. They have a new dog—Luna—a young, bouncy pit mix that likes to get in the middle of everything. She hardly ever stops moving, and she’s still recovering from a run-in over the summer in the woods with a skunk. Charlie and Amelia can barely control her. The second night after they move into town, Luna and my Dad’s geriatric fat beagle Clyde get into a nasty fight over some food, and Luna rips Clyde’s face up pretty badly: chunks of flesh torn from his snout. [Clyde has to be euthanized.]

What do we share with cancer patients?

I am reminded of an image that one of my cousins—a woman who lost her husband to a swift and brutal cancer last year—suggested to me recently over email: that living with a terminal disease is like walking on a tightrope over an insanely scary abyss. But that living without disease is also like walking on a tightrope over an insanely scary abyss, only with some fog or cloud cover obscuring the depths a bit more—sometimes the wind blowing it off a little, sometimes a nice dense cover.

A tough philosophy to embrace, but perhaps necessary:

It’s past midnight, and we’re lying in bed. “I just can’t wait for things to get back to normal,” says John from his side of the moon. “I can’t handle you saying that,” I say after a silence, even though I know he isn’t trying to fight. “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other. There might not be a ‘normal’ from here on out.”

More: Read “The Bright Hour: A Memoir of Living and Dying”.

Did my lens die at Burning Man?

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I’m trying to figure out if a Sony 16-70/4 zoom lens died during Douchebags in the Desert (a.k.a. “Burning Man”). I used it to take most of the photos linked from http://philip.greenspun.com/travel/burning-man and then had a local camera repair shop take it apart to clean out the dust.

Since then I’ve occasionally noticed some hard-to-explain softness in some images. I did some brick wall test images (you can download the full res) wide open at f/4 and also one stop down at f/5.6, both with a sufficiently high shutter speed to ensure no camera shake.

What’s a good way to test this suspect system?

What can we do to help Houstonians?

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None of my friends or even friends of friends in Houston have suffered significant home damage from the flooding, but the situation there is obviously about as bad as the worst-case predictions (see this ArsTechnica article).

Back in 2011 I wrote Japan Relief: Idea #1 (buy a knife):

The Japanese are an organized, skilled, reasonably rich, and generous people, so I don’t think that they need more in the way of donations to recover from the tsunami. What can we do for the Japanese then? Buy their exports. Over the next year or so, I’m going to suggest some things that we might ordinarily buy from other sources that we can instead buy from Japanese companies.

I’m wondering if the same reasoning can apply to Houston.

The Wikipedia list of companies headquartered in Houston suggests that most of us are probably already consuming products from Houston and that it wouldn’t be possible to consume more without wasting fossil fuels. Still, perhaps we could preferentially buy gasoline from Phillips 66, Shell, ConocoPhillips, and Citgo (owned by Venezuela and a donor to President Trump’s inauguration!). We could throw ourselves into the waters off the U.K. and let search-and-rescue contractor Bristow pick us up. When booking flights (maybe not for next week) we could choose to connect through Houston. We can buy our next car from a Group 1 Automotive dealer. We can eat at a Luby’s, Fuddruckers, or Cheeseburger in Paradise restaurant or, if touched by the gourmet spirit, at a Pappas restaurant. Top executive somewhere? Outsource a bunch of stuff to Aon Hewitt. Or get some enterprise software from BMC.

Readers: Other ideas? What can we do to help Houston recover?

A sad situation, but being sad and “sending positive vibes” via Facebook doesn’t seem as likely to help as being a customer.

Rich Jew brave enough to put on the mantle of victimhood

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From a middle-aged Jewish Trump-hating Facebook friend:

Shocked, awed and very proud to see Billy Joel come on stage for his encores last night at MSG [Madison Square Garden] wearing a Star of David to protest the rise of nazism and anti-semitism.

(Of course, the persecuted Facebook friend is wealthy enough to live in Manhattan so he can hop the subway to hear Billy Joel perform.)

As a classical music listener, nothing gives me more pleasure than celebrating American pop stars. My response:

Given Barry Manilow, Neil Sedaka, and Billy Joel, it is shocking that there is anyone on this planet with an anti-Jewish point of view.

Let’s not forget my favorite singer (and Jew): Michael Bolton (link to the great artist singing When a Man Loves a Woman; I restrained myself from linking to this Office Space clip)

The Facebook Trump-hater:

Make no mistake, this is no ordinary Jewish symbol, but rather the star that all Jews were required to wear by the Nazis! I think it’s an especially powerful, courageous act, especially for a mainstream performer who is known for not taking political stands.

In other words, a guy with over $100 million in assets, a cordon of security goons, and a waiting Gulfstream at Teterboro can be “courageous” by wearing a patch on his sleeve. I refrained from asking whether this wasn’t like a female Goldman Sachs partner knitting a pussy hat and marching to complain that women aren’t paid enough.

Related:

Uber considered Jeff Immelt as the new CEO?

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In Stocks for the long run: GE since 2001, I wrote about how GE stock lost nearly half its value over the 16 years that Jeff Immelt looted from shareholders (i.e., “served” as CEO).

“Uber Chooses Expedia’s Chief as C.E.O., Ending Contentious Search” (nytimes) says that the highly compensated Uber board actually considered Mr. Immelt as the appropriate replacement for their now-hated founder.

Readers: how is this possible? Is the thinking “Well, he cost GE shareholders about $100 billion in lost growth so there is just no chance statistically that he can waste another $100 billion”?

Journalists and numbers: why Americans are skeptical of the media

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“Teen birth rates spiked in Texas after Planned Parenthood was defunded” (Houston Cronicle):

The study by Analisa Packham, who received her doctorate in economics from A&M in 2016 and now works at Miami University, claims the reduction of family planning services in Texas has resulted in the closure of 80 clinics and an increase in teen birth rates by 3.4 percent.

So… an increase of prices by 3.4% = “minimal”; an increase in tax rates of 3.4% = “modest”; an increase of 3.4% that can be plausibly attributed to a policy change by non-Democrats = “spike”.

Related:

Breakfast in Redwood City on Friday at 7:30?

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Folks:

Continuing in my series of “horrors of having children late in life,” I’m doing a one-night trip from Boston to San Francisco later this week (will take redeye back so as to be home for the kids). Would anyone like to meet for breakfast or coffee in Redwood City (near the big Oracle towers) on Friday, September 1? It has to be 0730 because I need to be in an office building by 0900.

Please email me ( philg at mit.edu) if interested in meeting! Always happy to talk about aviation nerdism, computer nerdism, or any of the other topics on this blog.

Thanks in advance.

Philip

Is it capitalism or greed that leads to bad sex?

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A Ukrainian friend who speaks German derisively linked to “Why Women Had Better Sex Under Socialism” (nytimes):

A comparative sociological study of East and West Germans conducted after reunification in 1990 found that Eastern women had twice as many orgasms as Western women. Researchers marveled at this disparity in reported sexual satisfaction, especially since East German women suffered from the notorious double burden of formal employment and housework. In contrast, postwar West German women had stayed home and enjoyed all the labor-saving devices produced by the roaring capitalist economy. But they had less sex, and less satisfying sex, than women who had to line up for toilet paper.

Consider Ana Durcheva from Bulgaria, who was 65 when I first met her in 2011. Having lived her first 43 years under Communism, she often complained that the new free market hindered Bulgarians’ ability to develop healthy amorous relationships.

“Sure, some things were bad during that time, but my life was full of romance,” she said. “After my divorce, I had my job and my salary, and I didn’t need a man to support me. I could do as I pleased.”

Ms. Durcheva was a single mother for many years, but she insisted that her life before 1989 was more gratifying than the stressful existence of her daughter, who was born in the late 1970s.

All she does is work and work,” Ms. Durcheva told me in 2013, “and when she comes home at night she is too tired to be with her husband. But it doesn’t matter, because he is tired, too. They sit together in front of the television like zombies. When I was her age, we had much more fun.”

“As early as 1952, Czechoslovak sexologists started doing research on the female orgasm, and in 1961 they held a conference solely devoted to the topic,” Katerina Liskova, a professor at Masaryk University in the Czech Republic, told me. “They focused on the importance of the equality between men and women as a core component of female pleasure. Some even argued that men need to share housework and child rearing, otherwise there would be no good sex.”

Agnieszka Koscianska, an associate professor of anthropology at the University of Warsaw, told me that pre-1989 Polish sexologists “didn’t limit sex to bodily experiences and stressed the importance of social and cultural contexts for sexual pleasure.” It was state socialism’s answer to work-life balance: “Even the best stimulation, they argued, will not help to achieve pleasure if a woman is stressed or overworked, worried about her future and financial stability.”

Although gender wage disparities and labor segregation persisted, and although the Communists never fully reformed domestic patriarchy, Communist women enjoyed a degree of self-sufficiency that few Western women could have imagined. Eastern bloc women did not need to marry, or have sex, for money.

Those comrades’ insistence on government intervention may seem heavy-handed to our postmodern sensibilities, but sometimes necessary social change — which soon comes to be seen as the natural order of things — needs an emancipation proclamation from above.

Let’s leave aside the fact that the research results may be peculiar to Germany and German culture (if we assume that law is a reflection of cultural attitudes, note that German family law is completely different from the U.S.; alimony has been substantially eliminated and child support is capped at a small fraction of U.S. levels).

The Ivy League university professor who wrote the Times piece blames Capitalism for ruining female sexual satisfaction. What would a Buddhist peasant say, though? Perhaps that the suffering described could only stem from materialism and greed. An American content to live at the same material standard of living as a former East German wouldn’t have a “work-life balance” problem because a superior standard of living can be obtained today without working at all, either by collecting welfare or collecting child support. The American who doesn’t work can then spend his or her time doing whatever he or she wants. Does The Redistribution Recession show that there are millions of Americans who have figured this out and are therefore smarter than the professor?

The professor says that only Bigger Government can give women bigger sexual satisfaction. But what if the factors are simpler, e.g., working hours for the person seeking satisfaction, working hours for the sex partner(s) of that person, the availability of no-fault divorce so that one is not chained to a boring sex partner, and social approval and financial support for single parenthood so that one can enjoy children without being chained to a single sex partner. Every U.S. state offers no-fault or “unilateral” divorce. U.S. society offers social approval and either publicly or private-supplied cash for single parents. That leaves the working hours factor to explore.

Before declaring the Capitalist experiment a failure (what’s the point of money if you’re not enjoying life, right?), why not look at sexual satisfaction as a function of hours worked by the people studied and their sex partners? Maybe it will turn out that people who work at a government or union job with a strict 35- or 40-hour week can achieve the same level of sexual satisfaction as the women of former East Germany while simultaneously enjoying a higher material quality of life.

My facebook friends attack a friend of women in the workplace and vegetarianism

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My Facebook friends are squawking with outrage about the Trumpenfuhrer’s pardon of Jerry Arpaio.

“Pam and PETA in Love With Joe Arpaio, Arizona’s Anti-Immigrant Sheriff” (Jezebel, 2015) concerns the retired sheriff’s introduction of vegetarian cuisine in an Arizona jail.

The 85-year-old Arpaio was apparently a pioneer on an issue that has been in the news lately, i.e., protecting women in the workplace: “He also banned inmates from possessing “sexually explicit material” including Playboy magazine, after female officers complained” (from https://en.wikipedia.org/wiki/Joe_Arpaio )

Visiting New York after Moscow

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New York and Moscow metro areas have populations that are on a similar scale (20 million for NY; 16 million for Moscow) and both have a lot of diversity in terms of ethnicity, culture, and religion. I recently completed my first visit to New York after returning from Moscow. Here are some things that struck me…

Flying down in the Cirrus SR20 (20 mpg!) took me over the Tappan Zee Bridge, currently being replaced by a new bridge that, after adjusting for inflation, will cost 5X the 1950s price for the original bridge and, with 60 years of improved technology and techniques, take longer to construct.

Driving into Manhattan from the New Jersey suburbs took more than 2 hours on a Sunday afternoon:

Traffic is so bad that Facebook has a “place” called “Holland Tunnel Traffic jam” and, after checking in there with a status update, Facebook asked me “Would you recommend this place?”

The 9-year-old in the back of this minivan said, during the traffic jam, that she doesn’t want more immigrants to come and share her roads (. However, she was opposed to a wall along the Mexican border because she loves tacos.

We had stopped for gasoline in Elizabeth, New Jersey. It didn’t look as though anyone in the neighborhood had a W-2 job and the gas station convenience store clerk was in a bulletproof plastic box (to get rung up you placed your purchases in a turnstile; the clerk scanned them and then put the bagged items back into the turnstile).

Once we were riding in the car in Manhattan, we were bumped by potholes and plates every few seconds, a completely different experience than the perfectly smooth roads of Moscow (though in the pre-Putin 1990s apparently things got to a comparable level of decay over there).

Midtown Manhattan was crazily packed to the point where it was often challenging to find space on the sidewalk. Moscow is populous but it is more spread out and with fewer high-rises so it never feels anywhere near as crowded in any one spot. Our 9-year-old friend was excited about taking the subway so we descended into a 100-degree station to wait for about 10 minute. Then we got into a 90-degree subway car whose air conditioning was broken. An Upper West Sider who travels a lot said “New York has become Bangladesh, basically.” (the Moscow subway runs at one-minute (weekdays) or two-minute (weekends) intervals; see previous posting)

After Moscow, one of the most striking things about New York is how filthy it is. The curbs are lined with cup-sized trash. The sidewalks are dotted with cigarette-butt-sized trash.

Some of the streets in New York had so many homeless guys sitting and waiting that it looked as though a Hollywood team had been asked to prepare a scene of what it would look like after 90 percent of a city’s housing had been destroyed by a natural disaster or war.

After the debacle of trying to drive in from the suburbs we decide to escape via New Jersey Transit. The commuter rail runs only once per hour during mid-day (compare to every 15 minutes in Moscow) and therefore the service is barely used. We were the only passengers on a brand new car ($1.82 million) with about 150 seats, i.e., 1.3 percent occupancy. At $15 per person for the fare it is going to take a long time to pay off that Bombardier-built car! (New Jersey’s main fiscal problem seems to be unfunded pension liabilities.)

We had breakfast with a New Jersey resident whose live-in girlfriend is pressing him to get married and have children. About half of his peers who went down this road have lost houses, children, and future income via divorce lawsuits so he is planning to move away from New Jersey family law and into Nevada (50/50 shared parenting, capped child support, and limited alimony reduce the incentive for a lower-income spouse to end the marriage with a divorce lawsuit).

We stopped in Connecticut to see cousins. At the airport we met a police officer who complained that the unions had allowed the state to skip making pension contributions and then, years later, when the yawning gap between assets and liabilities became too big to ignore, government workers would be forced to make concessions. He was equally angry with the union bosses and the politicians. (despite these concessions, Connecticut is still having budget problems)

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