Cinco Cosas Mas

It's Monday. Shit's feeling real, especially in the news. That's why I'm sharing five more fucking awesome things--people and experiences and movements that I think are actively making the world a more ecstatic and intelligent place. Here goes:

Art Party

  1. Emma Watson and the HeForShe campaign:

    We all knew that Hermione was the brains behind Harry and Ron, right? Emma Watson, the young British actress that took on the famous role for most of her adolescence, has been appointed the UN Women Goodwill Ambassador, and as such, delivered a dynamite speech on what it means to be a feminist in 2014--and why it's time to involve young men and women in the solidarity movement for gender equality.
     

  2. Anne and Mark's Art Party

    The Art Party is an enormous event dedicated to art of all kinds at the Santa Clara County Fairgrounds in San Jose. The main exhibition is a huge warehouse full of visual art--paintings, sculpture, performance art and music--though there are multiple outdoor tents, bars, food trucks, and a separate building known as the Spoken Word room. We attended the opening gala on Saturday and were lucky to catch the Flash Fiction Forum, as well as readings by local poets and journalists. There was a film series, a cupcake truck, and art cars decked out like ladybugs. In other words: proof that the art world is alive and thriving in Silicon Valley.
     

  3. Emma Sulkowicz and "Carry That Weight"   

    Emma is a senior at Columbia University, where she tried twice to report an incident of sexual assault to campus, and once to the local police--to no avail. In an effort to shed light on the weight and impact of sexual violence, she has transformed this crime against her into a performance art piece by carrying a standard-issue dorm mattress around campus with her, everywhere she goes. As the weeks pass, she has elaborated on the "rules of engagement," which state that she is not allowed to ask for help, but she can accept help when it is offered. I can only imagine the effect that this has on a small liberal-arts campus in the middle of New York City; here, men and women are forced to witness as a young woman takes on a heavy burden. I have been following this story and am increasingly impressed with this artist's perseverance--both to herself and to a growing global movement. Go Emma.
     
  4. Alison Bechdel, 2014 MacArthur Genius 

    So if you've never read Fun Home, you really need to. I loved Bechdel's comic Dykes to Watch Out For for years before I discovered her memoir, which is beautifully illustrated. Movie lovers might recognize the "Bechdel test," three criteria named by one of her cartoon characters that determine a film's real depth. Namely: does the film have at least two women in it? Who talk to each other? About something besides a man? Bechdel is 21st-century artist/writer (you might be sensing a theme here) whose work is honest, funny, and relevant.
     

  5. Ed Damiano and the Bionic Pancreas 

    Ed Damiano is a biomedical engineer affiliated with Boston University--and he's also the father of a son who lives with type 1 diabetes. Damiano and his team are testing a medical device that is still seeking FDA approval--a "bionic pancreas" that consists of three major operating parts: a glucose sensor, a display monitor and a pump that delivers insulin. The machine tests the diabetic's blood sugar 288 times a day and makes minute adjustments to insulin dosages--attempting to mimic the day-to-day patterns of a functional pancreas. As I write this, I'm wearing a continuous blood glucose monitor and an insulin pump--two parts to this equation--but what Damiano hopes to achieve, before his son goes to college in 2017, is a device that is able to detect and treat all the highs and lows that diabetics experience throughout the day. Talk about fucking awesome.

ALS, JDRF & Rushdie

In 2006 I lived in a housing co-op in Isla Vista called Biko and shared a bedroom wall with Nu Driz, a master's student from Holland who was in Santa Barbara researching his thesis on Salman Rushdie. This is important. Nu cooked big house meals and fully committed to house party themes--and, if you were interested, would break down American literature for you, lickety-split. I had somehow been ignorant of Rushdie's exile until Nu sat me down and explained how entirely vital The Satanic Verses is and was and continues to be. This is all relevant.

I visited Nu and his husband Remy in their Leiden home a year after I graduated college, after spending the better half of a year in Spain. I was broke and took an overnight bus from Berlin to Amsterdam, spent a few hours at the Anne Frank House, scoured a few Dutch record shops, then hopped a train to Leiden, where Nu and Remy set me up in this gorgeous guest bedroom, which was (unsurprisingly) decked out in beautiful comforters and books, glorious books in various languages. I'll never forget how well I slept there, and how beautiful and kind they were, as were all their friends.

This week Nu posted his version of the ALS Challenge online. In lieu of dumping ice on his head, he took a note from Patrick Stewart and chilled some wine on ice, preferring instead to share an important fact: that eating fatty fish decreases the chance of acquiring ALS by 35%. To honor the fact, Nu shared a dinner of herring with Remy. He also took the opportunity to donate to another deserving charity, the Tuloy Foundation, a charity that helps street children. In his post, he suggested that I write something about another health cause--perhaps another foundation that needs attention.

I've written a lot about living with type 1 diabetes, an autoimmune condition that is diagnosed in roughly 30,000 Americans a year--JDRF estimates that 3 million Americans currently live with it. The United Health Group reports that type 1 diabetes accounts for $14.9 billion in healthcare costs in the U.S. each year. And that's assuming the people who need treatment are actually getting it. One of the first things you learn as an American with type 1 is that it is an expensive disease--and one currently lacking a cure.

In October, my family and I will be participating in the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes for the thirteenth time. There have been years when I did not want to participate--not out of disrespect for the cause, or disloyalty to our supporters--but because fundraising walks can sometimes feel like an endless exercise, charging toward a goal we can envision but we can't yet touch. You start to wonder what impact it all actually has, and wish that curing a disease were as easy as snapping your fingers. Or, say, dumping a bucket of ice water on your head. When you test your blood sugar several times a day and take insulin every time you eat, it's impossible not to measure your life differently, at least on occasion.

But here's the thing: The ALS Ice Bucket Challenge has made a tremendous impact already--if not in immediately finding a cure, in raising awareness, in letting the world know that hey, sometimes truly shitty things happen to truly wonderful people, and there are small things we can all do to, you know, make things better, if not now, then perhaps someday. The JDRF Walks have not yet cured diabetes--but if you've ever seen those little white shoes up at drugstores, or seen a flyer for diabetes camp, or witnessed a mass of families in white t-shirts flocking around the California Capitol on the first Sunday of October--you'll know that every step has the potential to shift cells. If not now, later.

So - in an effort to embrace Nu's challenge, I'm doing a few things:

  • My family and I are walking in the JDRF Walk to Cure Diabetes in October. (You can join us or donate by going here and searching for TEAM MALIBU PUMPERS.)
  • I'm splitting my ALS donation in half--$50 to ALS and $50 to JDRF. Because, hey, we're both worthy.
  • Nu, I'm going to finally sit my ass down and read The Satanic Verses. Because you told me to 8 years ago, and it's still on my list.

When in doubt: eat herring, drink wine, and donate to the charity of your choice. Because life is short.

 

 

 

 

 

Dear Health Insurance Provider,

Dear Health Insurance Provider,

It's time you and I had a chat. 

While this may be hard to understand, the very nature of living with a chronic condition is that it requires regular attention. I understand that this poses an inconvenience to you, because that means that every month you must process paperwork for the same drugs and the same services. That's probably a lot of work. And likely a lot of money. Let me break a few things down for you:

  1. The more conversations we have about what supplies are covered and which ones aren't, the longer it takes to get the things I need. The longer it takes to get the supplies I need, the greater I am placed at risk. The greater I am placed at risk, the more you are liable. 
  2. You don't get to decide how I treat my condition, or in what way. Those decisions are up to me and my doctor. And no, I am not going to discuss those decisions with you, though I can describe to you, for the fourteenth time, the difference between type 1 and type 2 diabetes, even though you are a grown-up and can Google that shit yourself.
  3. Please don't refer me to your website. Your website is terrible.

You're right; I'm lucky to be covered at all, because without you, the things I need to live a healthy life would be so expensive that I wouldn't be living a healthy life. You and I, we need each other. I'm willing to spend my lunch breaks and Sunday mornings on the phone with you, you, who are in Alabama or Missouri or Tennessee, you who probably have this conversation with hundreds of other people just like me. There are thousands of us out here, asking for expensive medical supplies and appointments with specialists and brand-name drugs. We must appear so anonymous, so faceless, so very annoying to you. And you're right. We are annoying. We are annoying because if we were anything less, we wouldn't get the care we need. We ask for your name, and your supervisor's name, and you better believe we'll call back tomorrow.

I care about you, Health Insurance Provider. I care so much that it affects my blood sugar, which means I need more test strips, which means I need more from you. Are things beginning to make sense? 

I'm glad we had this chat. Something tells me we'll be having this again soon.

Until then, I remain your faithful - and annoying - patron.

Yours,

Julia

 

 

 

 

 

 

Getting it all down

Things I worried about when I was five years old:

  • adults getting on their knees so they could look me in the face
  • what I'd do if someone actually passed me the ball on the soccer field
  • if I had somehow accidentally killed our cockapoo Sasha, who laid down on the grass and died about an hour after I fed her the remainder of my ice cream sandwich
  • if my part in the Teddy Bears Circus play required me to utter a single line

​Things I cared about: Beatrix Potter, dogs, cats, carrots, apples, pink jelly shoes, Sesame Street, Legos, my cousins, my parents, my kindergarten teacher Ms. Neu, my friends, palm tree ponytails

Things I worried about when I was ten years old:

  • delivering my first-ever hour-long oral presentation in Ms. Birse's class
  • whether or not I was officially too old to be watching Shining Time Station
  • ​being trailed by sixth-graders on BMX bikes on my walk home from school
  • Two words: Zach and Brad

​Things I cared about: all things Laura Ingalls Wilder, American Girl dolls, memorizing all 50 states and their capitals, winning the library reading contest, ​basketball, kicking the soccer ball against the garage door, writing in my diary, slip n' slides, Rollerblades

Things I worried about when I was fifteen years old:​

  • if, once my brother left for college, I'd somehow be an only child?
  • what I was actually supposed to do when a boy asked me to dance 
  • ​whether it was better to sag my corduroy pants below my waistline or fasten my overalls (yes, overalls) around the rib-level
  • getting an STD, inexplicably, without having sex

​Things I cared about: creative writing, rowing, youth group, disco dances, boys, theater, gardening, friends, family, the library, running a 5k

Things I worried about when I was twenty years old:

  • if I'd only get one chance at love, and I'd already messed it up
  • losing my insulin pump supplies in airport security, or, worse, being informed that I could not carry the medical supplies I needed
  • ​being mistaken for the "wrong kind" of American abroad
  • tsunamis and hurricanes

​Things I cared about: becoming fluent in Spanish, being in love, traveling, curing type 1 diabetes, writing, running a 10k, taking long bus trips around Granada by myself, tapas, housing co-ops, Weezer, Ben Folds, Wilco, friends, family, American politics, Rollerblades (still)

Things I worried about when I was twenty-five years old:

  • ​​whether or not I was in the right place; the right apartment, the right city, the right job, the right school, the right career
  • whether or not I had a "career," or rather, where one could pick one up
  • ever having the money or the job to afford the healthcare I needed

​Things I cared about: biking, running a half marathon, traveling, making the rent, finding a literary community, radio, Ryan, friends, family, getting into grad school, becoming a better writer

Things I worry about now:

  • finishing projects I start
  • finding time to maintain friendships while being a good daughter, sister, friend, partner
  • my 90-year-old grandparents
  • my privacy settings on social media ​
  • setting aside time to travel all the places I want to go, see all the friends I want to see, write all the things I want to write, run all the races I want to run
  • accidentally hurting the people I love the most

Things I care about: My family, my soon-to-be-family, my friends, Ryan. Writing well. Finding - and sometimes creating - community. Biking to work in the early morning along the Guadalupe River. Running faster. Tricking my body into thinking it's normal. NPR. Cooking. Really learning to listen. Books that wake me up. Camping. Pink Converse sneakers and green pants. Lighting a paper lantern and holding the corners of it with my favorite man in the world, watching as it gets ever smaller in the sky, surrounded by the happy grown-up versions of the people I grew up with. And always, forever, writing it all down.