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Random

Some thoughts on MS, AI, and novelty human exoskeletons

Bambi the lobster mermaid on Coney Island will make sense by the end of the blog.
“Lobster” by Angus McIntyre, Creative Commons Attribution Noncommercial 3.0 Unported License

Yesterday I read a tweet from the MS Society UK that said “80% of people with MS are forced to give up work within 15 years of diagnosis. That needs to change…” The intention of the tweet seemed in part to be to raise awareness of the need for those diagnosed with MS to immediately go on and stay on disease modifying drugs, but the immediate effect on me was to do some math on the green paper towel sitting on my desk. It appeared that I had an 80% chance of being out of work by the end of 2027, which was a little earlier than I had expected retirement.

Whether it’s rational or not, I don’t really think I’ll be forced to do anything because of MS. I’ve been on disease modifying drugs since diagnosis—putting aside the pesky question of when I should have been diagnosed—and the only symptoms I’ve experienced during that time have been a few weeks of what at worst could be called a nuisance. Certainly I’ve not experienced disability. That, however didn’t stop me from noticing an article about Japanese robotics that could help disabled people that kept popping up in my social media feeds this week. I never clicked through; the knowledge that someone was working on it should I ever need it was comfort enough.

What I did click through on today is a piece by Gary Marcus about the current state of artificial intelligence, including the big news this week that DeepMind beat the European champion in Go, “a game that has been notoriously difficult for machines.” I started reading it thinking nothing about MS, spurred on only by my recently acquired interest in AI, nurtured by encounters with terrific film and literature on the subject. (My late-blooming interest in AI is a matter of much derision on the part of my lifelong sci-fi-loving husband.) But when I got to the part where Marcus recounts a talk by a graduate student of a deep learning expert on the same day the Go paper went public, I immediately felt a pang familiar to any patient of neurological disease who quickly learns the answers to most of her questions are “We don’t know.” Speaking about AI, the graduate student acknowledged “(a) people in the field still don’t really understand why their models work as well as they do and (b) they still can’t really guarantee much of anything if you test them in circumstances that differ significantly from the circumstances on which they were trained.”

In other words, AI sounds a lot like the human brain. And as with the human brain, it’s inevitable (as had been the fodder for the conflicts in countless sci-fi plot) that AI will be unleashed on the world before we ever understand it. It’s already been happening for a while with products like Siri and Google Now.

I’m less concerned about this than what Marcus poses at the end of his article: “The real question is whether the technology developed there can be taken out of the game world and into the real world. IBM has struggled to make compelling products out of DeepBlue (the chess champion) and Watson (the Jeopardy champion).”

As a person with a neurological disease that has the potential to impact both my motor and cognitive function, the one that’s more terrifying is the latter. Sure, not being able to walk is a horrifying prospect, but people are working on powerful exoskeletons I’ll soon be able to suit up in to handle that; I want mine to look like a lobster, just for the record. (Note to self: business idea for novelty human exoskeletons.) If AI scientists want to deliver a compelling product, how about one that will supplement cognitive skills in patients with neurological impairment? All I ask is she’s given a better name than Siri.

Berlin

A Thank-You Note to Mr. Bowie

Stoop of Paris Bar: “Passerby be modern.”

By coincidence I spent most of the day before David Bowie died in a part of West Berlin whose identity is inextricably linked to him. It started with my arrival at Zoo station—a key location in the 1981 film Christiane F., which Bowie made the soundtrack for and also appeared in as himself—to take a walking tour that, unbeknownst to me, had been cancelled.

At loose ends once I realized the tour wasn’t going to happen, I ducked into the Helmut Newton Foundation across the street from the station and spent an hour or so refreshing my memory on Mr. Newton (Jewish Berliner who fled in the 1930s, killed in a car accident leaving Chateau Marmont in the noughties, fond of photographing naked ladies). At the museum gift shop I admired two of the more lewd postcards, but the prude in me settled on a Newton portrait of David Bowie in a bathrobe sitting on the edge of the bed at Berlin’s Kempinski Hotel. I would send it to my husband, I thought, who is still in California. Bowie is his hero.

Paris Bar

After the museum, I walked the couple blocks to Paris Bar, an establishment on Kanstrasse that’s infamous for hosting Bowie and Iggy Pop during their Berlin years—three years in the late 1970s when Bowie made three albums, including Heroes. It was mostly empty when I arrived, and the waiter didn’t seem to mind that I wandered around taking photographs—undoubtedly not the first person to do so—including of a an eight-person table hidden in an alcove in the back corner and watched over by an enormous portrait of a female British artist whose name I forgot (there’s also what I think is a very small portrait of Bowie over the bar, but on second glance it may have just been a young boy). It’s a spot that would be perfect for a debauched celebration, and I wished very much to have the occasion to book it. Instead I sat contentedly in a banquette at the front, ate a steak, half-read the International New York Times, and people-watched as couples rotated through the seats to either side of me.

My Sunday with the ghost of Bowie was not an uncannily timed homage to a personal hero. While I admire him, the truth is that I can’t legitimately call myself a fan. For that to happen I think you have to discover an artist on your own, most likely when you are young, and I didn’t discover Bowie until my late twenties or early thirties vis-à-vis my husband, for whom, as I mentioned, Bowie is a hero. THE hero.

Through a likely combination of being slightly too young and too suburban, Bowie didn’t come into my childhood consciousness until Let’s Dance, a song that even my husband finds unfortunate. With no other history of Bowie, I just assumed he was another 1980s pop star.

He was, of course, about the farthest thing you could get from that and, at the same time, that. Bowie bent and morphed and transformed a hundred times, shapeshifting to suit his artistry. And for this reason, even if I had been exposed to him, perhaps shepherded into the coolness by some older teen-aged sibling of a friend, I doubt I would have liked him as a kid. I grew up in a household terrified into submission by middle-class WASP norms. Gender bending raging talents weren’t something we knew what to do with. Bowie would have, in all likelihood, scared me.

An aside. When I was in middle school, like everyone else I knew I loved Prince’s Purple Rain. My friend, Michele M., and I used to crank it out of a ghetto blaster on her front lawn as we lathered ourselves with baby oil and laid out in the sun (my family was afraid of a lot of things in the eighties—Jimmy Carter comes to mind—but skin cancer was not yet one of them). Prince was nominated for multiple Grammys that year and I will never forget watching the telecast home alone with my mother because when Prince appeared (in a cape and heeled boots in my memory), she commented, to no one in particular, “what a flaming faggot.”

In fairness to my mother, she didn’t say these words with anything that resembled contempt (and, as it turns out, she has a gay daughter now, so life’s funny that way). It was more like she was trying out a new concept, something she had heard (which, hilariously, was wrong), turning the words over aloud as if trying on a new pair of shoes. After that night I never heard her use the word again, and I only mention it now to illustrate my family’s complete ineptness at absorbing anything that fell outside our normative boundaries.

This morning when I heard about Bowie’s death on Twitter, one of the sweetest tweets I read was from a gay writer, Steve Silberman: “Goodbye, David. You probably saved the lives of millions of gay/trans/odd/”extraterrestrial” kids. RIP”.

Without wanting to sound dramatic, I think my husband was probably one of those odd kids, the kind who, unlike me, wasn’t terrified by Bowie but deeply comforted by his otherness. My husband, exposed to some of the harsher realities of life at a young age, has always been comforted by things that make me uncomfortable—terribly sad movies, for example. These reflections of life as he knows it in art make him feel sane, he tells me. It’s a relief that others see the world like him. And for that, Mr. Bowie, I thank you.

Christmas Letters

Christmas Letter 2015

In March we took an opportunity to return to Berlin from California for my work—by which I mean to keep my job we moved. We told ourselves it was a chance to travel, and it was. We visited various outposts of Berlin, touring Frederick the Great’s summer palace in Potsdam, the churches where Bach conducted choirs in Leipzig, and nearly capsizing in a car-battery-powered houseboat on a storm-ravaged Müggelsee, whose shores are lined with DDR-era dachas.

Elbe-side garden of Hotel Helvetia

Farther afield we stayed at an eco-hotel (as far as I could tell this meant light wood furniture and guests wearing Birkenstocks) in Saxony Switzerland, a national park between Dresden and the Czech Republic border that I’ve wanted to visit since I saw a TV show about it years ago on the BBC. This is the landscape of sandstone mountains that German romantic painter Casper David Friedrich made famous in his painting Wanderer Above the Sea of Fog, but we mostly clung to an earthbound bike path between towns and villages along the wide river Elbe. Here kelly-green buoys strained against the current like giant waterskiing gnomes. It was spargel (asparagus) season and we ate well.

Post-Hebdo and pre-Bataclan, we had Paris. We walked from our Berlin apartment to the Hauptbahnhof and, two trains later, stepped on to the platform at Gare du Nord and flâneused and flâneured to Île Saint-Louis, which I like to think gives us bragging rights to say we walked to Paris. That evening in the Marais we drank enough wine that it seemed like a good idea to buy a pack of Marlboro Lights, which is to say just the right amount of wine for a Thursday evening in spring in Paris. The next day we rented a tandem bike that we pushed more than we rode along the traffic-clogged left bank before returning to the Marais for an encore of the night before.
In Belgium we regretted spending only one night in Antwerp in favor of two in Bruges, regrets that we soothed with local brews and plans to return. I have a rain check for a date with some of Rubens’ fat ladies at the cathedral.

View from the Alsatian village of Itterswiller

In September we cycled around Alsace for a week and ate one of those lunches that can make a vacation, at the kind of place you decide to stop at only to get out of the rain that turns out to be full of charm at every turn. Le Pressoir de Bacchus is run by a husband (front of house) and wife (chef) team who will let you park your bikes in their covered private courtyard, assist you in translating the menu with a French-English dictionary they keep behind the bar since there’s no cell phone signal and therefore no Google Translate, and all the while pretend not to notice you’re dressed in appalling stretchy cycle clothes that the local French patrons wouldn’t be caught mort in. Oh and you eat a crayfish and mussel risotto that makes your very picky husband realize he does in fact like mussels, to say nothing of the Baba au Rhum for dessert. Long live Baba au Rhum. (It will not surprise you to learn that this year I was one of those insufferable people that takes pictures of their food, all cataloged here rieslingdiaries.tumblr.com.)

The Guvnors’ Assembly assembles at The Royal Oak in Tetbury

In October I took an unplanned trip to NYC to see my niece and her parents. We took selfies on top the Empire State Building, saw Matilda on Broadway, and brunched with an old college friend, but I suspect if you ask my niece her highlight was the hour she spent with my college friend’s daughter digging mica out of the boulders near the Columbus Circle entrance to Central Park.

In a year of travel luxuries, the biggest luxury was that we were able to take monthly return visits to our beloved Cotswolds. It’s a destination that needs no embellishment, but visits to the old-timey Giffords Circus with husband’s aunt and uncle and a vintage-themed cycle outing with the jauntily-attired Guvnors’ Assembly were highlights.

Paris from Pont Louis Philippe

While humble brags are the bread and butter of a Christmas round-up letter, it seems strange not to mention the two defining news events of a year living in Europe, the attacks in Paris and the ongoing refugee crisis that will see up to a million people arriving in Germany before the year is out. Since the attacks in Paris I’ve found myself making silent and foolish-in-their-perceived-logic calculations about mundane choices in daily life—is this restaurant or airplane route or Christmas market more or less likely to be a target—and still, like everyone I know, I’ve gone on doing all of these things. Life is anything but business as usual for the tens of thousands of refugees that arrived in Berlin this year, their presence largely shielded from view by the urban spread of the city. Like Los Angeles it’s a city whose sprawl makes it perhaps too easy to remain in your own enclave.

Back in America for the holidays we’re looking forward to hanging out with my niece in Florida. I have high expectations for the Christmas present I’ve bought her, a jumpsuit with a navy-blue top and gold-sequin shorts that looks like something you could wear to tap dance your way undetected into the chorus line of 42nd Street. I suspect she will be more impressed by some iridescent shrapnel of a shell she scavenges from the beach. And this, I think, is a humble yet hopeful wish to leave you with. May we all scavenge something shiny from this holiday season. Merry Christmas and happy new year!

Books

Top 10 Books of 2015

Better English language bookstores in Berlin than my California hometown mean I actually read a few real live paper books in 2015

Weekend newspapers and the literary internet have been brimming with best books of 2015 lists, which got me thinking about my favorite reads of the year. I’m not one of those people (who are those people?) who can keep up with the flood of good stuff being written so not all of these were published in 2015, even if that’s the year I got around to reading them.

1. The First Bad Man by Miranda July was my favorite book of the year: fresh, startling, gross, and very very funny. I didn’t think I’d find a more original female protagonist than Tiffany in Nell Zink’s The Wallcreeper, then I made the acquaintance of Cheryl, star of The First Bad Man. Goodreads review here.

2. The Wallcreeper by Nell Zink is a lightning-paced whirl of a flawed but addictive novel from a writer championed into prominence by the much-maligned Jonathan Franzen. Just read it. Or, if you must know more, read my longer Goodreads review here.

3. Clothes Clothes Clothes Music Music Music Boys Boys Boys by Viv Albertine is a memoir by the first lady of punk you’ve never heard of. She hung with Sid Vicious and received fashion advice from Vivienne Westwood, but if that’s not enough to get you interested it turns out this is a rather moving tome on living a creative life. I read Elizabeth Gilbert’s Big Magic right after I read this—which I also enjoyed—and was struck by how much Albertine’s memoir is a gritty, real-life demonstration of the principles Gilbert espouses. Goodreads review here.

4. Love, Nina: Despatches from Family Life by Nina Stibbe is admittedly a niche read, but if you happen to be an Anglophile who’s a fan of Alan Bennett and London Review of Books (nevermind that the one time you actually read LRB a piece by Will Self made you want to stab your eyes out with pencils) and generally impressed by some vague concept of north London intellectuals, you won’t be able to resist Nina’s Stibbe’s real-life letters to her sister during her time as a nanny for LRB editor Mary-Kay Wilmers. A Nick Hornby-penned adaptation is coming to BBC One TV screens in 2016.

Books 5., 6., and 7. are The Shepherd’s Life by James Rebanks, A Place In My Country by Ian Walthew, and The Snow Geese by William Fiennes, which I guess means I have a thing for British male writers waxing lyrical about nature and the concept of home. Rebanks and Walthew also offer local insight into two iconic British landscapes, the Lake District and the Cotswolds, respectively, that most of us only know as visitors. Goodreads reviews here and here.

8. Outline by Rachel Cusk proves I also have a thing for solitary woman protagonists. Evocative of Joan Didion’s best fiction. Goodreads review here.

9. Men Explain Things to Me by Rebecca Solnit is a book of feminist essays described by a Twitter friend as a gateway drug for Solnit. She must have been right because I’m now reading Wanderlust.

10. Redeployment by Phil Klay, the lauded book of short stories by an Iraq war veteran and required reading for Americans. Goodreads review here.

Since it’s a Top 10 list I’ll stop here with a quick mention of two other books I enjoyed: Sarah Hepola’s drinking memoir, Blackout, and a collection of essays by writers without children, Selfish, Shallow, and Self-Absorbed, edited by Meghan Daum. Oh and We Need to Talk About Kevin by Lionel Shriver, who also happens to have an essay in the previously mentioned collection from Meghan Daum.

Here’s to a 2016 full of good books— may your nightstand runneth over.

Cotswolds

An Atheist Goes to Church

The War Memorial in Northleach

By luck we were back in the Cotswolds last weekend for Remembrance Day, so we joined our village for the ceremony at the local war memorial followed by a service at our church.

While I’m an atheist for all intents and purposes, attending church in the Cotswolds has always been a non-issue for me. Perhaps because I was raised Presbyterian or perhaps because village churches are intricately woven into this Cotswold landscape I love, I’ve always found a sense of comfort in their drafty Anglican sanctuaries.

On this Remembrance Day I attended church out of respect and to sit for an hour in a still, sacred place.

If my use of the term “sacred” jars, allow it. I mean it in the dictionary sense of something that is both highly valued and important, and deserving of great respect. Of course we all know the reasons religion isn’t to be highly valued nor deserving of great respect. The list is as long as my arm, as old as the crusades, as recent as the ISIS massacre in Paris last night. But on this occasion church was sacred. It was also a reminder of how much work we have yet to do to create secular institutions that replace the sacred functions historically provided by the church.

These sacred functions were laid out in the major sections of the order of service: The Gathering, Listening for the Word from God, Praying Together, Remembering, and The Act of Commitment. With some secular adjustments—changing “Listening for the Word from God” to simply “Listening,” and “Praying Together” to something like “Sharing Hopes and Burdens”—it’s a blueprint for a secular approach to community.

During “Remembering,” the group of people bearing the poppy wreath moved to the church’s War Memorial by the south door and, as The Last Post sounded, we, the congregation, turned to face them. An elderly gentleman, the leader of the wreath party, kept silence for a long time. Long enough to feel the grief of those long-ago wars and the grief of the world today. Long enough for me to appreciate the rare opportunity to grieve with others.

And of course there were hymns. Speaking on behalf of the tone deaf of the world, one of the unparallelled benefits of church is the opportunity to sing with abandon. And for anyone who loves language, it’s hard to beat hymns. I don’t remember the name of the hymn in question, but I do remember marvelling at seeing such an elegant use of the underused word “concord.”

Perhaps the most striking part of the service was the last, “The Act of Commitment,” in which the congregation is asked to say out loud that “we will” seek to heal the wounds of war and work for a just future of all humanity. I know they’re just words, but there’s a simple power in asking that people speak them in front of other people, without the virtual veil of Twitter or Facebook. And I know of nowhere else that I’d be asked to say aloud such radical things.

Berlin

Stumbling Forward

“Look where you’re walking” is the phrase you’re most likely to hear my husband mutter not-so-under his breath while out walking around a busy part of Berlin. The primary offenders are tourists, looking for something in one direction while their feet propel them forward in another; pedestrians preoccupied with their mobile phones; and, most fearsome of all, pedestrians preoccupied by their mobile phone in one hand while wielding a lit cigarette with the other. Abstract the phrase slightly to “look in the direction you’re headed,” and it works on both a literal and figurative level. My husband’s irritated admonishment is transformed into a piece of advice worthy of a commencement speech: deceptively simple, pithy, equally pragmatic and profound. Much of the canon of canned advice—dress for the job you want, aim high, aim at nothing and you’ll hit it every time—are variations on the theme.

And yet in Berlin there’s an exception to this rule. To see the Stolpersteine—German for stumbling blocks or stones—you have to look down, which is what I happened to be doing last Saturday, undoubtedly staring at my phone, when the glint from a trio of brass plaques caught my eye. I had just read about the Stolpersteine in ExBerliner, an English-language magazine targeted at expats in the city, and so I stopped to examine what I now recognized as miniature monuments to victims of forced deportation in Europe between 1933 and 1945, a group that includes Jews, Roma and Sinti, homosexuals, dissidents, and Jehovah’s Witnesses. There are thousands of them around Berlin, and yet I had somehow never noticed them before. Inscribed on each of the stones in front of me now was the victim’s name, date of birth, year of deportation, and what happened. Irma, Karla, and Ellen Rosenthal lived here, were deported in 1943, and murdered in Auschwitz at ages 38, 14, and 10 respectively. It’s a fair amount to take in when you were just walking to a movie.

The Stolpersteine are the work of a German artist, Gunter Demnig, who, since 1992, has been creating the plaques based on carefully researched nominations and funding from private citizens. People sometimes apply for a plaque on behalf of a relative or, in other cases, simply to acknowledge someone who once shared the same address. The reasons are personal but the content of the inscriptions is regimented, particularly when it comes to describing what happened to the victim. I was struck by the commitment to speak plainly and truthfully in Demnig’s instructions on the official Stolpersteine website:

“TOT (dead) or ERMORDET (murdered); for a fate unknown three question marks are used: ???. Instead of suicide we put FLUCHT IN DEN TOD (flight into death). We do not use the term “verschollen” (“missing”), nor the term “TOD” (“Death”) since it suggests a natural death. Nor do we use the term “emigration”. Instead, the stone will state: FLIGHT + year + the country of destination.”

(It’s impossible not to notice the parallels between his insistence not to use the term “emigration” and the current debate over the term migrant versus refugee.)

The intimacy of these memorials—each one’s origin linked to a private citizen, modest in size, and placed in front of what is or once was a home—stands in contrast to the city’s Memorial to the Murdered Jews of Europe. The latter is very much in the public space, near the Brandenburg Gate and across from the Tiergarten, comprised of undulating terrain between 2,711 concrete slabs that convey an abstract sense of the magnitude of what occurred. Both, I think, provide a required perspective, but it is the Stolpersteine that have captured me most because they are intertwined with the minutiae of my daily life.

There are eight victims memorialized on my street, including Abraham Fuss, who lived in or near the building that now houses a shop where I bought the bike I use to commute to work each day. He was a tailor, and each time I pass the wedding dress atelier of Andreas Remhardt farther up the block, I think of him. Jeanette and Ruth Grünberg along with Charlie and Golda Wisen lived near the shop where we bought the chairs we sit in every day around our dining table.

Stolperstein for Jenny Theis, a singer who lived
around the corner from me, murdered on this day in 1942

Berlin is a city that’s always looking forward, as marked by the permanent presence of cranes in the landscape. And yet it also strikes me as a city that has taken pains to look backwards to remind itself of its past, not just in the Memorial to Murdered Jews in Europe and the Stolpersteine, but on plaques that show up on buildings all over the city to tell the stories of victims of National Socialism and, later, the Stasi. Despite its constant reinvention—currently as a hotbed of hipster-ism in Europe—it is a city trying to keep itself alert to the possibility that, at any moment things, could go terribly wrong. The fact that aerial bombs left over from WWII are still discovered, often during construction, and defused on a regular basis is one very real manifestation of the threat. Berlin is a city that is literally sitting on bombs.

The city’s reminders to itself, whether deliberate monuments or unintended remnants of war, seem to show up in its current handling of the European refugee crisis. According to recent reports, approximately 1,000 refugees are arriving in the city each day. Germany is expected to receive upward of a million refugees this year, of which Berlin is obliged to accept 5%. It’s a challenge for which the city’s collective memory, held in part in the Stolpersteine, will need to be tapped.

Books Cotswolds

Report from Cheltenham Literature Festival

It’s the most wonderful time of the year: the Cheltenham Literature Festival in the Cotswolds. I spent the first night of the festival at an intimate evening with the bald spot on the back of a gentleman’s head and the much maligned Mr. Franzen.

 
Before he began to read, Franzen noted he was in the fourth week of touring to promote his new novel, Purity, and admitted he he had hit a wall just before the start of this event. Despite his fatigue, he still managed to charm. I particularly enjoyed hearing him read from a scene in the book where a couple has sex on a nuclear missile in Amarillo, Texas.

However, an opportunistic journalist hoping for another Iraqi-war-orphan-esque gaffe would have been rewarded towards the end of the Q&A when a woman in the audience asked him about his relationship with his mother. He started his answer by offering his gratitude for the middle-class privileges his parents had bestowed on him, including an education and disapproval of his writing—which he said gave him “something to prove.” Then he went on to note that on top of all that, they were also nice enough to die when he was in his thirties, liberating him to write things he could have never written when they were still alive, including The Corrections. I can just imagine the headline: “Franzen Glad His Parents are Dead.” The audience seemed to take the answer in the spirit in which he intended, though. No gasps or tutting as far as I could hear, and the line for his book signing was still out the door by the time we finished dinner and moved on to the next event of the evening.

I spent the next hour in a much more intimate setting, just 30 or so audience members, the moderator and Nell Zink, Franzen’s literary protégé who was profiled in The New Yorker earlier this year. My friend headed to the tent next door to see the wildly popular Caitlin Moran, and the uproarious laughter from that crowd occasionally seeped into our venue.

Nell Zink reading from The Wallcreeper

Zink was funny, too. Not necessarily ha-ha funny, but odd and awkward and charming and all over the map. At one point she veered off in an explanation of a character’s hairdo in The Wallcreeper to enlighten us about an eighteenth-century hair condition amongst German peasants that included dreadlocks and was referred to as Plica Polonica (a Polish braid). There appeared to be little filter between her darting to-and-fro mind and her mouth, which was a good thing as far as I’m concerned.She was, in short, exactly how I imagined someone who had written the lighting-paced and weird and wonderful The Wallcreeper to be, and I would have been disappointed if she had been any other way.