Easter, Epilepsy, and Trying to Cure a Broken Brain

Today is Easter. When I was a little girl, Easter meant a white dress, dinner at 2pm and featuring ham or something like that, and looking for hidden dyed hard-boiled eggs. There was always one hidden in the base of the ceramic little man — dwarf? troll? leprechaun? elf? It just looked like a miniature man with exaggerated craggy features. My mom made it in a class in the late ’60s, I think.

When I was old enough to understand the religious connotations/significance of the holiday, I mostly shrugged. Though I had a period of searching for religious/spiritual meaning like many people, my views on the Bible solidified after reading Live from Golgotha by Gore Vidal when I was 19, and I realized that if videocameras and DNA testing had been around in the biblical era, there would be no Christianity. It’s all about timing.

This isn’t a post about my religious beliefs, however. It’s about one specific Easter, and how broken brains suck.

Many people who follow this blog know that for about 5 years, from 2008 – 2013, my life centered on trying to help my brother’s kids recover from the degradation of their mother’s mental condition and the traumatic things that marked their childhoods as a result. The Easter right before I went to stay with them, my now-ex-sister-in-law gave one of her adolescent twin daughters an elaborate Easter basket filled with goodies. She gave the other a hard-boiled egg. In years that followed, I made the coolest Easter baskets possible, trying to make up for that slight.

This woman started as a ridiculously doting mother. Lived for her children to a degree I personally found vomit-inducing. Built her entire life on being a mom. Over time, her brain burned out from a combination of epileptic seizures and the hardcore drugs that were used to control her condition, and she went from a socially-acceptable doting mother to a bipolar/schizophrenic mess ranging from terror-inducing tormentor to pathetic blob.

My life went from urban web worker with a social life to suburban goodaunt/fakemom/niecerescuer on a day in spring 2008 when my brother called and asked me to come to Georgia immediately to take my oldest niece out of the house and bring her up to my mother’s in upstate New York (where she would be living to go to college that coming fall) because he’d been sleeping on the floor outside this niece’s bedroom at night, and was afraid his wife was going to kill their oldest daughter in the night.

I flew down immediately and took all three girls on a road trip up the east coast, stopping in DC for some educational tourism and with documents in my bag granting me the legal right to have the girls with me because everyone was pretty sure my then-still-sister-in-law would call the police and report me as a kidnapper. The details of her decline, as I learned them in dribs and drabs, were horrifying. That these girls were emotionally abused is unassailable. The fact that they couldn’t even remember a version of their mother who wasn’t this crazed monster, beyond sad. The oldest asked me if I’d ever seen her mother smile. “I’ve seen it in old pictures, but not in real life.” She wasn’t counting the evil leery grin that occasionally still made an appearance when her mom was being cruel.

How do you tell a teenage girl that not only had you seen her mother smile for many years, you’d seen her so in love with her daughter that nothing else in the world mattered, when now that girl is literally running away from her mother because her life depends on it? How do you reconcile the person before you, who retains almost nothing of who they once were, and can never hope to regain it because this isn’t just a mental illness, this is a brain that has been so physically degraded that it cannot be reclaimed? And if we are going to talk about God on this Easter Sunday, how does anyone believe (and oh, that sister-in-law was a massive believer) that an omniscient, omnipotent deity exists in love, yet allows these things to happen — nay, makes them happen? But I’ll leave that argument to Jaquith. :)

The other horrible effect of the epilepsy was that all three girls were exposed to high doses of barbiturates in the womb. Doctors stopped giving these drugs to pregnant epileptic women shortly after the twins were born, as studies started showing learning disorders, especially those that involved sensory-processing issues. For anyone who followed my attempts to get a decent education for the twins in spite of their various sensory-processing disorders, you know they drew the short straw on the in utero lottery.

So. Epilepsy. Unless you know an epileptic, chances are you don’t think much about it. But epilepsy is one of the most common neurological problems in the US, behind only migraines, strokes, and Alzheimer’s disease. More than 2 million people in the US currently have active epilepsy (vs one-off or periodic seizure activity). That’s more people than watched The Mindy Project last week (side note: that’s just wrong, that show is so funny). And for every person who has epilepsy, there are people around them who may be affected, like children who learn how to call 911 before they learn how to tie their shoes, or whose mothers’ brains get so fried that they lose all the maternal love and compassion that once ruled them. More religion: Is the ‘soul’ separate from the brain? And if there is a soul, is her soul fried, or trapped in a broken brain? Either way it’s ridiculously awful.

So. Epilepsy treatment. DRUGS. MOAR DRUGS. DRUGS THAT MAKE YOU A ZOMBIE. Then there’s surgery to split the brain in half, but there are cognitive and other side effects (I know this thing sets things on fire, but I have no idea what it’s called!). Then there are the clinical trials for microchips to help control seizures, kind of like pacemakers for the brain. But there’s no magic bullet, and mostly they keep using drugs.

The big problem with current medications is precisely that the medication is everywhere in the brain. It’s affecting virtually all the cells all the time.
- Ivan Soltesz, quoted by NPR

This guy, Ivan Soltesz. Fancy research with light and mice and seizures and brains and trying to affect only the misfiring neurons when they’re going nuts rather than flooding all of the brain with treatment all the time. Ooh, do I like him.

It’s too late to undo the damage epilepsy caused in my ex-sister-in-law’s brain, or the damage that her post-damage condition caused her children, and that really sucks. Not being able to save someone is just plain terrible. But wow is it exciting to think that someone may finally be on the right track to making epilepsy nothing more than an inconvenience to be disclosed on a health form. Keep it up, Ivan!

WordCamp Atlanta 2014

I’ll be heading to WordCamp Atlanta next weekend. It’s a sold out event, so no more tickets are available, but the videos of the sessions will all be posted to wordpress.tv afterward. I have fond feelings for WCATL after living in Georgia for the last 4 years, and am looking forward to seeing everyone again (and hopefully, finally getting all the meetups figured out this year for the chapter program). Will you be there? If so, say hi! Heads up, my hair is different again this year (in case you don’t recognize me) — it’s longish and light brown. See you there!

Inspectlet on wordpress.com

This is a personal blog post, not “WordPress News” to be reported. I hate having to make that clear, but I really mean it. WP-related blog stalkers/scrapers, you know who you are.

Okay, so I have this problem where I keep trying to sign up for email subscriptions to WP blogs and instead it subscribes me through the wordpress.com reader, which I don’t use (it’s fine, just not my workflow). Every few months or so I try to investigate settings to get it to send me emails instead of sending things to the reader, and every time I eventually give up because those settings are still really hard to find and/or get your head around and/or change successfully. So I miss a lot of blog posts, sorry. If it’s important for me specifically to see something, ping me to make sure I saw it.

Consider the scene set: early-rising worker bee trying to navigate the bowels of wordpress.com settings at 5am looking for a way to change post subscriptions from going to the reader to being sent by email.

Today I tried again and I noticed something I hadn’t seen before. This doesn’t mean it’s new or noteworthy, just that I never noticed it, and if there was an announcement about it in the past* I missed it. Here’s what I saw on the wordpress.com account settings screen:

Screenshot from settings page with privacy notice

I’m a weird mix of rabidly pro-privacy in theory and carelessly blasé when it comes to guarding my own information (3-time victim of identity theft!). But I do have strong feelings about unauthorized tracking of online behavior.

  • I think these types of things should be opt-in, not opt-out.
  • I also think the opting should be done via checkbox or other selector on the site I have the relationship with, not by forcing me to go to an external site that I don’t want to visit and I assume just cookied the crap out of me as a visitor to their site separately from the cookies they already had because of the automatic inclusion.
  • At the very least, if a policy changes or a new tracking service is added, I want to be informed in advance and allowed to opt out before the new tracking happens.

I have always known that wordpress.com does some stats tracking (hello, little pixel smilie pace in the margin of our sites), but I was not aware that we’d started using a service called Inspectlet.

That said, a lot of work news does kind of slip right by me unless someone tells me about it — subscription woes aside, I stopped following the other Automattic team blogs at Matt’s suggestion when I made that big effort to stop working 16-hour days a year or two ago — so I wasn’t too upset, figuring there must have been an email with a note about it offering me an opt-out link that I’d missed. I’d just opt out now, and all would be well.

Except that when I went to their site to opt out and looked on their home page to see what Inspectlet actually does, it freaked me right the [expletive] out:

Screenshot of Inspectlet service description

Dude.

That’s like… even creepier than Woopra was, and wow, what an invasion of privacy to do something that invasive as opt-out rather than opt-in. It records all the keystrokes? So if I write (for example) a long rant about how x does y and doesn’t need z (or whatever) but think better of it and erase it rather than publish (the number of times per day I hit Cancel Reply instead of Publish has a direct relationship to my productivity and mental health), there’s a recording of it out there anyway, on a third-party service I never signed up for? THAT. IS. CREEPY. AND. WRONG. If a site wants to record that kind of live usage, then not only should the user have to opt-in, but maybe they should even get rewarded somehow for their willingness to participate. How much do we pay each person that lets us watch them use wordpress.com via usertesting.com? How many airline miles does someone earn for filling out surveys? We could at least send these people a t-shirt in exchange for recording their every (heretofore assumed to be private-ish) move.

Trust me, I get it that this is not with malicious intent. I truly believe that Automattic — and every Automattician — has good intentions, or I wouldn’t work there.** I get the concepts of aggregate data, real-time usage data, real users in real situations vs simulated experiences in usability testing setups. I really, really, really do. I’m still not down with it being opt-out. So if you missed this like I did, and you use wordpress.com, and you just feel weird about your actions being recorded, head on over to https://wordpress.com/settings/account/ to access the opt-out link.

I hope I don’t get in trouble for posting this, but if I do, maybe one of you will buy me a mocha to cheer me up as a reward for bringing this to your attention? :)

*Investigation shows that opt-out links were added in May 2013 and posted about on internal blogs. Didn’t see a post on the wordpress.com news blog, nor an email in my email archives. That said, it’s possible I may have deleted such an email without reading it, so I have asked the folks who set up the Inspectlet stuff if there was one.

**I’ve quit jobs in the past over moral disagreement with things as minor as how they spent their advertising dollars (cough, Vermont Teddy Bear), so I’m pretty serious when I say that I won’t work for a company that I think has bad intentions.

WordPress.com on Jeopardy

Jen Mylo:

Not as good as old-school SNL celebrity jeopardy, but still… Fancy!

Originally posted on Matt Miklic:

Alex Trebek said the name of the thing I make. My life, it is complete.

View original

RIP Philip Seymour Hoffman

I really enjoyed Philip Seymour Hoffman’s work. I think my 3 favorites of his roles were Joseph Turner White in State and Main (understated and earnest), Sean in Next Stop Wonderland (small role, but hysterical), and Lester Bangs in Almost Famous (so great).

Since his death this weekend from an apparent overdose of heroin, he’s being hailed as the greatest/most well-respected actor of his generation, which is my generation. I’d agree with that.

The tragedy of a death too soon is something that many people more eloquent than me have written about, but there’s something that is starting to piss me off. They’re reporting that police found 50 bags of heroin at Hoffman’s home, and both the authors of news articles and comments on these articles are saying Hoffman was anywhere from a dealer to planning his suicide to stocking up for the heroin apocalypse.

For a heroin addict, 8-10 bags per day is pretty normal. When I worked at the drug clinic at UVM doing buprenorphine trials, someone with a usage of less than this wasn’t even eligible for the study. We had a lot of people even doing 12-15. So we’re talking about less than a week’s supply. Not a plan for suicide or distribution or a heroin apocalypse. Just an addict, but one with enough money to purchase a few days at a time instead of having to resort to theft or prostitution every day to make the buy. So if you hear/see someone defaming Hoffman based on the 50 bags report, set them straight.

Thanks for all the great movies, Philip Seymour Hoffman! You were great!

Choosing a Topic

People who know me well know that in 2008 I was finishing up a bachelor’s degree and applying to graduate schools — a variety because I was torn between several areas of study — when Matt convinced me to skip grad school and redesign WordPress/work for Automattic instead. People who know me well also know that I am the worst tech worker ever and never back things up, and have frequent electronic failures. Kevin has been making fun of this “crazy electromagnetic energy that computers hate” since 2000, and for a while Matt was calling me Jubilee. Where these combine is that when I agreed to take the job and was leaving NYC, my final papers in a couple of courses were lost in a computer death (I loved you, 2007-era macbook!), and with no backups, I just decided to move on without wrapping up college at all. 

It’s bugged me, because while I don’t need a degree for the job I have now, nor even necessarily for a job that I may want in the future, having a degree does provide options. If I wanted to apply to grad school now, I could, if I’d finished that BA. Instead, I’d have to go back and re-do a couple of courses whose final papers never got turned in, and jump through a number of administrative hoops to clear out “you didn’t officially drop this course the term in the middle when you took a break” type things, and probably delay it a year. Being in NYC would make this significantly simpler, but alas I’m not there.

Several of those classes were write-offs. They’ll simply need to be re-done, because undergraduate courses fail you if you don’t finish. Graduate classes, on the other hand, have a delightful notion of an incomplete that can last for years. I suppose this has to do with long-running dissertations and the like, but in this case, taking a graduate course for undergraduate credit left me with an INC that the professor said I could overwrite if I ever sent in that final paper.

That paper was so specifically NYC, though: it examined the role of women in 1920s society through the swimwear at Coney Island. It was a really great topic, but research saved on that dead computer wasn’t stuff that would be easily re-acquired. Weeks of sitting in a microfilm (not microfiche, microfilm) carrel scrolling page by page through 1920s newspapers and magazines published in New York City to find every advertisement and news photo that showed a woman in a bathing suit had been torture, and I had no interest in repeating it. So I never went back to it.

This fall I started thinking about going back and finishing college, tying up all those loose ends. The need to be in NYC for weeks at NYPL for the research was still an issue, though, so I wrote to the professor and asked if it might be allowed to change topics. He agreed, and since then I’ve been struggling to come up with a topic that interests me and that has enough of a visual culture record to be doable without being so over-saturated with research that it’s boring.

It’s only a 30-page paper, so it needs to be something specific (like the specificity in that Coney Island swimsuits paper) but tied into a broader historical context (like the shifting role of American women in the ’20s) and with a record in visual culture (ads, editorial cartoons, photographs, paintings, whatever) that can be accessed without needing to spend weeks on a microfilm machine somewhere away from home. I’ve had trouble picking one. Passing thoughts (some to the point of clever titles, some just general topic ideas) have included:

  • Environmental Activism in America
  • Cover Girl: The Changing Face of Women’s Magazines
  • Women in Medicine
  • Women of Capitol Hill
  • American Spinsters
  • Passing Brave: Women Soldiers Who Fought as Men
  • Centerfold: Sexuality for Sale
  • Women’s Work
  • Romance Novel Covers
  • Role Reversal: The Sadie Hawkins Dance
  • Pirates, Pilots, and Prostitutes: Women at Sea in the Age of Sail
  • Witches in America
  • Women in Tech (and/or Science)
  • Lynching in American Culture
  • The Transition of Teaching: a Male to Female Occupation
  • Sewing Machines and Women Laborers in [location and/or time period]
  • Women of the Oneida Community
  • Congregations, Cults, and Concubines: Women in American Religion  [some year span here]
  • The Martha Washington Hotel, 1911 — 1983

All those thoughts (tempered by how difficult it might be to find source images) wound up in the idea Suffragettes, Spinsters, and Scientists: Non-traditional Women in American Visual Culture. But then that sounded too broad for 30 pages. So then I was thinking of narrowing it to Suffrage and Anti-Suffrage movements. But really I just can’t decide — I’ve had to make so many decisions in the past couple of months, my brain is fried. What topic should I choose?

 

 

Huzzah! RIP Elizabeth Peters

Last night I had insomnia, and as I jumped from browser tab to tab looking at things I never make time for during the normal day, I discovered that one of my favorite authors died in August. I was sad, because I loved her work, and it’s had a recurring role in my life, despite not being lit-ra-choor.

First

In 1991 I was 19 years old, living and working on a dude ranch in the Sonoran desert of Wickenburg, Arizona — dude ranch capital of the world. I’d lived/worked away from home before, but only within a couple of hours. This was right after I dropped out of college and decided I wanted to try living in the desert. I had not actually read Desert Solitaire yet, but I was surrounded by people who had, and absorbed their secondhand Edward Abbey fantasies.

The main living room at the ranch where guests would gather for drinks before dinner had a wall of bookshelves, filled with paperbacks that people could borrow or trade as desired. One day when I didn’t have a ride to the library in town, I went to the wall and pulled out a tattered paperback titled Naked Once More by Elizabeth Peters. It turned out to be a mystery novel with a fantastic middle-aged former-librarian-turned-romance-novelist amateur detective female lead (long before chick lit made such things popular). It was full of literary references, and it made my brain light up so much that I decided to go back to school during the spring term while I finished out my dude ranch stint.

I also spent that spring semester motoring through every book written by Elizabeth Peters and her other pen name, Barbara Michaels. The Elizabeth Peters series were my favorites, especially Jacqueline Kirby (of Naked Once More) and Amelia Peabody.

Second

I don’t remember when, but at some point between 1992 and 1995 (I *think* it was then. Maybe it was later. She might remember; I can’t.), I introduced Andrea Middleton to the books. She also loved them. We would shout, “Huzzah!” in true Amelia Peabody form when we needed to get ourselves going.

Third

During a period of winter depression when I lived in Bellingham (sometime during 1995-1996?), I pulled myself out of the pit by reading all the Kirby and Peabody novels in a marathon to rival any of today’s Netflix marathons. When I emerged, I shouted, “Huzzah!”

Fourth

Living in Vermont (1996?) and reflecting on that time in Bellingham, I wrote the 2nd of 2 fan letters I’ve ever written in my life (the first was to Luke and Laura of General Hospital when I was very young and watched it with my grandmother). I thanked her for writing books that were so good they could beat depression, told her that Huzzah! was the Andrea-Jen war cry, and asked if it was going to turn out that Sethos was Emerson’s illegitimate brother. She didn’t reply, but based on the way she wrote about author fan mail in Naked Once More, I was glad to have written the letter.

Fifth

Andrea was pregnant and choosing a name for her first child in May of 2008. She had a boy name lined up and was trying to figure out a girl one. Emma, a family name, was in the running, but all the girls in Andrea’s generation had had A names, so she considered that as a possibility and mentioned the one she had in mind. I loved Emma, but hated her A name, so I sent her a list of girl A names I thought were better, including Amelia after Amelia Peabody for an adventurous spirit and steel-trap brain. Just after election day, welcome Amelia Middleton.

Postscript

On August 8, 2013, at the age of 85, Barbara Mertz (Elizabeth Peters’s real name) died at her home. Her Amelia Peabody series spanned 35 years. Mertz won numerous awards for her books, and is one of the few writers of historical novels whose accuracy I have never questioned — she held a PhD in Egyptology. She was also an animal lover, and cats frequently featured as characters in their own right in her books.

Today I adopted another cat (Sadie Zap’s mom, who was destined for a shelter), and I’ve named her Miz Kirby in memory of the first book that sucked me into the Elizabeth Peters world.

Brown and white cat

Miz Kirby

Andrea and I are thinking that we should re-read the Peabody oeuvre in memoriam. Anyone want to join us?

Sandwich Song

In my teenage years I worked at a hiking lodge run by the best bunch of outdoorsy liberal hippies ever. We used to sing to wake up the guests (the morning we did Psycho Killer was the best), and the first summer we also had to sing when we brought out the trail lunches. This is the song that was sung:

Sandwiches are beautiful, sandwiches are fine.
I like sandwiches, I eat them all the time.
I eat them for my supper and I eat them for my lunch,
And if I had a hundred sandwiches I’d eat them all at once!

Once there was a pretty maid, the fairest in the land.
The young men in the county all were asking for her hand.
They offered her the moon and they offered her the sea.
I offered her a sandwich and she said she’d marry me!

Automatticians at WordCamps

Automattic is getting pretty big, almost 200 folks now, spread all over the world. That’s a lot of people we can send to WordCamps. I remember when it was mostly Matt and I splitting up who’d go to which events — how times have changed in five years!

Since we’re hiring so enthusiastically, my team is putting together a little guide for Automatticians on how to be an awesome Automattic representative at a WordCamp. I have a pretty giant list of tips and advice at the ready (you’d never have guessed, I know), but it occurs to me that non-Automatticians are probably the best people to ask about what we can do better when we pop in to a local WordCamp.

Here are some of the things from my giant list so far:

  • Don’t travel in packs. When there are a few or a bunch of Automatticians at an event, we tend to cluster together because we so rarely get to see each other — and we like each other — but it makes it less likely that we’ll meet new community members. 1. Because we’re too busy talking to each other to reach out to new people. 2. Because it’s intimidating for someone new to break into that group.
  • Ask questions. A lot of WordCamp attendees will already know about Automattic, so while we should definitely be a resource for anyone interested in the company, the better use of time is getting to know the community members: who are they, how are they using WordPress, what would help them make their community more vibrant, who are the local independent consultants/themers/developers that we should know about?
  • Help out. WordCamps are a lot of work. Automatticians aren’t visiting dignitaries — we’re getting paid to be there — and we should help out along with the locals, whether that’s taking a shift on the help desk, moving chairs, or passing out shirts.
  • Be identifiable. Wearing the same WordPress t-shirt as everyone else is cool and all, but wearing a shirt that identifies the wearer as an Automattic employee, or a lanyard for the badge or something, would make it easier for people interested in talking about Automattic (especially people interested in jobs!) to find the Automatticians in the crowd.
  • Carry cards. Saying “email me later” works better when the card with an email address is handed over at the same time. That said, getting community member contact info so the burden of follow-up isn’t on them is even better.
  • Tweet It.  Using Twitter to let local followers know Automatticians are there is helpful. They might love to meet in person and talk about working at Automattic or contributing to the .org project and may not realize we’re there, especially if we’re not on the speaker list.
  • Don’t hog the speaker slots. Yes, Automatticians are speakers you can rely on, and we do employ a lot of seriously smart people, but if the speaker roster is filled up with Automatticians, that doesn’t do a lot to help grow the experience of local folks, which is part of what WordCamps are about.
  • Don’t be exclusionary. If planning to go off to an Automattician dinner or something after a long day of not traveling as a pack, don’t make those plans in front of other people, who will feel excluded (or might not understand what’s happening and might inadvertently show up later and crash the dinner); make private plans in private via Automattic channels. Even better, don’t go to private dinners, go to dinner with members of the local community.
  • Be present. In sessions, don’t work on the laptop, just pay attention to the speaker. In the crowd, don’t focus on the phone, smile and meet new people. Be there for the whole event, don’t take off early or skip the second day. Show the local community that Automatticians are respectful and want to be there.

What would you add? In the comments (or in an email to me at jenmylo/wordpress.org if you don’t want people to see what you think) make suggestions for what Automatticians can do to be awesome at WordCamps. It’s also okay to give examples of times when we have not been awesome. Learning from our mistakes is good, too. Thanks in advance for your help!