2.10.13

Yesterday was a beautiful, sparkly day, a cold day, the day before the Pope resigned, the Lunar New Year. Yesterday I ran 6 miles, programmed my first website, made lasagne with Ryan. I thought about the blood in my veins and how, after twelve years with diabetes, I still see it - every day. And how trivial that seems. And how funny it is to get used to adhesives on your stomach. And how, over time, you grow to really love those little sticky patches, because of what they do for you. And how tiresome this narrative must be, the preexisting-conditioners-speak-out-story, the let-me-show-you-how-tough-I-am story.*

I saw a new endocrinologist for the first time in several years. While reviewing my blood sugar charts he said something about a common trend toward hyperglycemia after meals, and completely without prompt, I burst into tears. He waited a beat and then said, "I certainly hope this isn't causing you psychological stress."

There are a lot of ways to interpret that. What this man doesn't know is that I am a master at interpreting things a thousand different ways. It is, at times, my job to do just that. I looked at him and said, "This shit is frustrating." Because the truth of it is, no matter how boring that narrative gets, it's there for you like any terrible reality tv show or late night drama. Yes, the last twelve years have been amazing. I have gotten to travel the world and study things I care about and work with really interesting people and live in beautiful places and spend time with my family and friends and fall in love and go on adventures. And on a good number of those days I've been downing Gatorade on my bike or waking up shaking in the middle of the night or taking an injection because my site doesn't work. I imagine other people's bodies as these machines that tick involuntarily; mine is a watch that must be wound, every two days, using a 7cm needle.

Know that this is not a call for sympathy. This is an acknowledgement that days can go by and years can pass and we can accomplish great things while still honoring, for one day, that nine or ten or eleven or twelve years ago our lives were unaffected in a way that they no longer are. That this is, for better or worse, a reality, one that occasionally causes stress, but one full of awe, and honesty, and true, real love.

So that was yesterday.






*I want to mention, too, that when other people living with, well, whatever it is we humans live with, share their stories about their own conditions, I feel a kinship and compassion so strong that I know this narrative will always have its place.

On running




Today I ran one of the most beautiful courses I've ever done with my friend Shirlee. The half marathon started at the Santa Cruz waterfront, wound along West Cliff, wandered out beyond Natural Bridges State Beach and looped Wilder Ranch. That loop was by far the best part of the 13-mile run. I've had the pleasure of running along many beautiful beaches - Santa Barbara, Malaga, Tenerife, Hawaii - but today the waves were crashing so high that as we followed the coastline, our feet clipping the bluffs, we were dusted in ocean spray. The bluffs followed an ess curve and with every bend you could make out a long line of runners dotting the opposite cliff. Sometimes I think this is how humans should move - all of us chugging along at our own pace, in twos, threes, and fours, occasionally breaking the line just to feel that momentary thrill of leading the pack.

Sometimes I feel the best about my body when I'm running.

There is something that happens when I am racing, usually around mile 10. I find someone ten yards ahead and decide it's time to beat them. As soon as I get on their heels it's time to pick the next person. And so on. Today I noticed new magic. All I had to do was name the color of their jersey, and before I knew it I'd catch them. Purple. Blue. Pink. Red. It felt like writing. Name a feeling and you feel it. Describe an action and there you are, ten steps forward, ten times faster. Running falls somewhere between careful calculation and a complete freedom to be - it is a measurable escape, a feeling I crave often.

Mile 12 is intolerably long and today I found myself chanting a little mantra. This is something I can do. This is something I can do. When I was first running with my dad, I'd remember the trains from Shining Time Station and the way they'd chug, I think I can I think I can. At some point I dropped the think.

How wonderful things can be when you don't have to think, when muscle memory is good enough. I love it when I'm running and I forget for a moment that actions have consequences - that on nights like these, after long runs, I must set alarms to test my blood sugar in the middle of the night, or that, everywhere I go, I'm zippered up with all kinds of sugar. I think I can? No, this is something I can do. And did -- with my boyfriend's mom Shirlee, who has run six of these babies before. Talk about badass. And at the finish line, there they were - Ryan, my parents, his dad, our dog Taj, the ocean itself. All limbs still functioning, all organs intact.

I have a few friends who run the full 26.2-mile marathons and my respect for them (and their knees!) deepens with each race. I don't know if I'll ever run that far in one go, but I think, maybe, someday I can.

one hundred word story #54: Cure

You have the cure for what I've got. You carry it in a locket around your neck. Maybe that's why you keep me at arm’s length--you can feel the keening. You don't know your own power. How could you? There aren’t any holes in your body. The systems, they all work. Your nerves are superfine. You think I like you. Really, I’m sticking around long enough to see that locket open. I want to be there when the cure spills out, maybe like smoke, maybe like gunshot. Either way, I’ll be here to remember what it’s like—being whole.

one hundred word story #38: Reminders

There are days when the universe imposes its limits. There are days when the numbers overwhelm, when the beeps at my side are bullies, when things hurt again. After ten years it should be implacable; the skin should be thick enough. But when it gets this thick, every intrusion pierces the surface, digs a little too deep. And on these days the best thing to do is sit very still and listen. Let the universe clatter with other voices, other numbers, other sorrows. When I get up, the skin, it sloughs off, leaving the hurt behind for some other day.

Meet Wesley


This is my friend Wesley. He is in seventh grade and just joined the cross country team. He recently tested for his brown-black belt in karate. He has traveled the globe with his family.

He and I have a few things in common. We both play sports and have close-knit families. We also both live with type 1 insulin-dependent diabetes, which means that every day we get to test our blood sugar on our fingers and take insulin. As of last week, he now uses an insulin pump, a small device which attaches to his body via a canula and delivers insulin hourly.

I met Wesley shortly after he was diagnosed--a mere five months ago. When I told him and his family about the Juvenile Diabetes Research Foundation and our upcoming Walk to Cure Diabetes, he agreed to sit down with me for a few minutes to give those of you in the non-diabetes world an idea of what it is like to live with type 1. Over the next week or so I will upload another video or two of friends who have agreed to share their story. It is my goal that together we can produce an image of active, healthy, engaged individuals who live great lives, but would rather not have to deal with a chronic condition.

If this inspires any gift-giving action, feel free to wander over to www.jdrf.org and search for Team Malibu Pumpers to throw us a buck or two. I look forward to the day I can get my kids a diabetes vaccine. Until then, I'm honored to meet kids like Wesley, who not only work with their families to control their blood sugar, but do a whole hell of a lot more with their life as well.

Maggie Nelson and the livable condition

"217. 'We're only given as much as the heart can endure,' 'What does not kill you makes you stronger,' 'Our sorrows provide us with the lessons we most need to learn': these are the kinds of phrases that enrage my injured friend. Indeed, one would be hard-pressed to come up with a spiritual lesson that demands becoming a quadri-paralytic. The tepid 'there must be a reason for it' notion sometimes floated by religious or quasi-religious acquaintances or bystanders, is, to her, another form of violence. She has no time for it. She is too busy asking, in this changed form, what makes a livable life, and how she can live it."

--from Maggie Nelson's Bluets, p.88

I love this.

I finally got my hands on a copy of Maggie Nelson's Bluets, a thin tome of numbered variations on the color blue.

I was recently talking with a good friend who lives with bipolar disorder about this very issue--how hard it is to respond when well-wishing strangers tell us that living with a chronic condition is some sign that we were marked at birth as people "strong enough" to handle them. It is perhaps the weirdest form of flattery. I understand this desire to explain away the bullshittedness of disease, that perhaps when we don't have a solid medical reason, or a clear cause and effect, we need to make up some reason why.



I tell myself these stories regularly--that I'm a bigger, stronger, tougher person because I'm diabetic. But there's a difference between growing stronger as a result of coping with something, well, unwanted, and the belief that those of us "lucky" enough to live with chronic conditions do so because we're the best for the job. That the sheer randomness of disease is best explained in terms of our more flattering qualities, or, better yet, that there's some cockamamie predestination to who gets to deal with what in life.

In Nelson's book, she references this quadri-paralytic friend and her body several times. In 109, they "examine parts of her body together, as if their paralysis had rendered them objects of inquiry independent of us both. But they are still hers. No matter what happens to our bodies in our lifetimes, no matter if they become like 'pebbles in water,' they remain ours; us, theirs." (pg. 42) This, I think, is what so many medical professionals don't understand: that even if our bodies are imperfect, especially if our bodies are imperfect, they are still very much our own. It has little to do with strength, or even luck. It's just a fact that we come to terms with on our own, as we go on figuring out a "livable life"--something that I imagine is much easier with four functional limbs. Nelson explores this fine line between acknowledging tragedy and leaving room for self-definition, which is perhaps one of the reasons Bluets reads like a literary Bible, peppered with philosophical nuance and no-nonsense confession.

Thanks, Maggie, for capturing the livable condition. That's what I want to read about.








2.10.11

There's this itchiness in the air that starts in February. It's a sneeze, it's a hiccup, it's that lull between holidays, it's that impatience for it to be spring already. But the itchiness I feel is different, it's a memory that grows faded with every passing year. It's that reminder that there was a time when my fingers were plump and perfect and my abdomen free of scars, that there were several years of my life that were different than they are now. It's a B.D. and an A.D. and my life is a perpetual switching of clocks. For years there was a solemnity that came with acknowledging the anniversary of my diagnosis as a diabetic. I've written about 2/10 every year since 2001, including twice on this blog.

There is something satisfying about saving up all of one's emotional brouhaha for one specific day of the year, and then having it out with the universe on an annual basis. What does that mean? Oh, in the early days it was a weird form of flashback, recalling days on the Sacramento River when rowing was much easier without three cans of pineapple juice rattling around beneath my seat, soaking up as much teenage ennui as I could and categorizing it all as a sort of post-traumatic stress. And then as the years went by there was an overwhelming nostalgia not for the before-diabetes days, but for the days when my blood sugar was still a relatively exciting and challenging new game. And now I've hit the first decade mark and I find myself feeling a whole lot of nothing. Maybe there comes a time when one has told the story enough times, fictionalized it and reproduced it on stage and repeated it to children and grandparents and in self-help books, that any semblance of what one's life could hypothetically be, or what might have happened or could have happened had things been different -- none of that is interesting anymore. Those are just the stories of other people's lives, and frankly those aren't the ones I tend to read.

This year February feels like a placeholder for a time when I should be feeling something different. There's a misdirection here. I'm happy. I'm in love. I'm in school. I'm working. I'm learning things I want to learn. Shit happens and sometimes it's not fun. The difference between the things I've actually learned as a diabetic, versus the things I've often said I've learned; that's the story that still needs writing. But this time I don't want it to be about me. Or even about diabetes. It's about a word or a place I don't know yet but I definitely want to go.

I won't lie, though: there is a small part of me that always secretly wished a little leprechaun would surprise me on my tenth anniversary with a pot of...insulin? No, that's not it. Maybe I just hoped that one day my pancreas would show up at my doorstep like a long-lost son, and we'd embrace.

Hey, it could happen.

one hundred word story #9


There's this feeling you get when discrete parts of your body fail to communicate with your mind. Or maybe that's not it. Maybe discrete parts of your body communicate with your mind, but your body speaks only Portuguese and your mind, Spanish. Maybe it is that your mind never gets around to checking its messages. Sometimes your body finds other ways to talk back. Maybe your hand casually slaps your face. Maybe your feet seek out and find every last crack in the sidewalk. It’s a passive aggressive exercise, but then you think, maybe that’s what keeps you alive. Portuguese.

Landmark Health Bill Approved--Nearly

Remember in 2008, when Obama promised a season of change in Washington?

It looks like it might have just begun, blooming with the beginning of spring's cherry blossoms. Just today, the House of Representatives approved the latest health care bill, which stipulates that health insurers allow children to stay on their parents' plans until their 26th birthday, that children with medical problems not be dropped from their family plans, and that many large companies face stiff fines for failing to cover their employees. The bipartisan bickering about passing this bill included a group of conservative Democrats (who are they, I want to know?) who insisted on including a clause clarifying that none of this federal health insurance money go to providing abortions.

Just what does this all mean?

It doesn't mean that getting health care coverage will be instantly easier, nor does it mean that this bill has yet become law. The vote now goes to the Senate. And even if the bill does get passed without hitch, it still might be several months before everyday Americans see real change in their health care coverage.

That said, I can't help fluttering with excitement at the thought that maybe, at some point, so many of the decisions I make in life aren't dictated by who will pay my medical bills, and how. It seems nothing short of ironic that this bill pass just two months shy of my 26th birthday, where for the past three years my family has been generous enough to pay to COBRA my health insurance. Fresh out of college I applied for my own health insurance, but was denied across the board because I have a pre-existing condition. I was offered insurance through my previous job, but didn't work there long enough for the transition between companies to make any real difference.

Now I'm back in school, and the CSU system (when faced with enough budget cuts to knock it to its knees) offers a laughable $500 reimbursement for insulin...per year. (Any diabetic reading this knows that one vial of insulin has a retail value of $90; as someone on an insulin pump, I go through 3 vials a month--$500 would last me about six weeks.) So - so I'm ridiculously lucky that my parents are able to help me out, but I'm damned well ready to help myself out, or to let the government throw me and my fellow pre-existing-conditioners a bone.

Harry Reid, you listening? Blue Cross? HealthNet? Aetna? Kaiser? Big business? Weak-kneed Democrats in the Senate, Republicans and Independents who don't know enough diabetics or asthmatics or recent college grads foregoing health insurance--I hope you're paying attention.

I hope you're all paying attention, because the rest of us everyday Americans, we certainly are.

2.10.10

I just transferred the title of my grandfather's car into my name. I am about to own a car for the first time in my life.

There's a reason I chose today to do this. February 10 is the day I tend to reserve for minor catastrophes and miracles. Sometimes these experiences choose me; sometimes I choose them. There's a cosmic comedic timing in the universe that seems to collide for different people on different days. February tenth is one of those days.

Last year I wrote about 2.10.01 as Julia day, the day my pancreas died and the day the rest of me lived on. This year the anniversary of my diagnosis as a diabetic has no apparent, overarching, thesis; it simply is. Nine years is long enough that the daily tragedies of testing my blood sugar and adjusting my lifestyle simply aren't unusual anymore. Yesterday, as I was leaving for the radio station, the tubing of my insulin pump looped around my doorknob, and I walked a full three paces before I recognized that vague sting in my abdomen.

Being diabetic has its gifts: at times, I find ways to compartmentalize my body in ways that seemingly remove all its emotional power. My fingers double as pincushions, my stomach is pockmarked with remnants of last weeks' pump sites, my pancreas is an eternal internal mystery. And that's all well and good. The detachment that comes with recognizing you have no overall power in the universe is, in the end, a powerful feeling. There's strength in realizing we're not as strong as we think we need to be.

And yet, there is that lingering essence to this one day a year that will always have some unnameable, unknowable drama to it. It's almost as if this day is the tiniest bit longer or shorter than all the others in the year, and those moments in either direction are the secret to some deeply-protected mystery.

Yesterday I had the opportunity to speak with someone at FasterCures.org. This was part of a larger story we're pursuing at KQED, but I leaped at the opportunity to ask an expert, point blank, why nine years ago, a doctor told me I'd be cured within five years. Is it really fair to make that kind of hypothesis, to someone who has just learned she has a chronic condition?

The scientist, who I'll leave unnamed now, said simply: "I know...is it hope or hype?"

I'll never forget the doctor that day nine years ago, who looked at me and my parents and insisted that "She'll be cured in five--maybe ten--maybe fifteen years!" And I remember thinking, "What happens in the meantime?"

Here's what happens in the meantime: I graduated from high school, then college, lived abroad twice, got a job, went to graduate school, fell in love, acquired a new vocabulary and taste for glucose gel. And who knows, maybe diabetes will be cured next year, or six years after that, or twenty years after that.

Until then, I'll be driving my very first car.

On Coming of Age



A new year begins. Heck, a new decade begins. Well, nearly. Remember "Party Like it's 1999?" Remember Y2K? Remember back when Monica Lewinsky was considered newsworthy? When social networking wasn't something you could major in? Remember back before we invaded Afghanistan and Iraq, back when airport security took thirty minutes, tops, and we took our film to drugstores to get pictures "developed?"

I still have a few dozen sheets of negatives lying in the bottom of a drawer somewhere, just in case. Sometimes I wonder if the figures in those freeze frames could ever live out alternate realities, seeing as they are stuck in that sepia limbo between the camera and the page.

Last week, one of my fortysomething colleagues said offhand, "Man, so much happened in the last ten years--I can't imagine coming of age during the 2000s." I started to nod, and then stopped before I realized I had come of age in the 2000s. I went to prom in 2000--with five girls. I went to an anti-inauguration rally in 2001, and watched Bush get sworn in twice. I got diabetes a few short months later, in February 2001. I graduated from high school in 2002, the "Year of the Palindrome." I went to college. I went to weekly protests against the Iraq war, starting in 2003. I fell in love for the first time in 2004. I studied abroad in 2005, then went back after graduating from college in 2006. I saw my first series of peers get married. I worked my first "real job" in Spain, 2006-2007, and my first "real real job" in San Francisco starting in 2008.

I saw our first African-American president get sworn into office, January 2009. I started graduate school. I learned how to navigate the awkward office politics of a corporate world. I saw friends fall in love. In the past ten years, seven of my friends came out to me as gay or lesbian. I saw my grandparents lose their brothers and sisters, significant others and friends. I saw more friends than I can count suffer with various forms of depression. I worked at two different camps for kids with diabetes. I saw gays marry, legally, in San Francisco, both in 2004 and in 2008, and then saw their rights denied again. I met Spaniards, Belgians, French, Mexicans, Moroccans, Brits, Scots, Finns, Swedes, Chileans, Colombians, Bolivians, Peruvians, Australians, Israelis, Russians, Portuguese, Koreans, Japanese, Chinese, Kazaks, Turks, Brazilians, Germans, Americans.



In ten years, I've been an "editorial intern" seven times, and am about to start my eighth. I've made coffee. Taught English, journalism, comics, poetry, art, Spanish. I've photocopied my share of paper. I've answered phones, and lots of them. In ten years, I've interviewed for more than 50 jobs, and applied for at least double that. I've applied to graduate school twice. I've rowed, played soccer, run at least 20 races between 5-12k, waterskiied every summer, biked to work or school most weeks. I've read some books, but never enough. I've written some, but in surprising bursts of energy. I've saved letters, photographs, books, cards, favorite t-shirts and countless mix cds, but never enough money.



I've tested my blood sugar at least 32,850 times.

I broke one person's heart. I think. To my knowledge.

Amidst all of this "coming of age" business, a few things remain the same. The same passions: the urgency to express, whether it be via writing, teaching, community service. The same family core: a wealth of love and support that I appreciate in different ways every year. The same base root of friends, both those that I have loved and known most of my life, and the ones I meet along the way. The same annoyances (this diabetes b.s., political propaganda, the bizarre emergence of ignorance in all its gnarly forms), the same curiosity for all things international. The same undeniable randomness of the universe, the world that brings us both Dick Cheney and Planned Parenthood, J.K. Rowling, Zadie Smith, and Twilight, Sudan and Darfur and Hurricane Katrina and Wangari Maathai and Haruki Murakami.

And although there are so many headaches and so many complications in this world, thank goodness for the plot twists, for the complexity, for the questions. This is what keeps us reading, what keeps us writing, what keeps us interested.

Coming of age in the 2000s -- the "thousands" or "ohs" -- we're not Gen-Xers or post-modernists. There's too many of us, in too many different shades. Thank goodness.

Fundraising = Sugar for the Sugarless



That's me and my insulin pump enjoying a completo (glorified hot dog) in Santiago, Chile. That little machine is my lifeline, believe it or not. That little machine is one reason to support JDRF.

It's that time of year again: asking for money time.

There are lots of reasons people ask for money, but the very existence of nonprofit organizations is proof that there is a certain talent for asking for money professionally. Ideologically, I support a number of political and charitable causes, and when I can, I donate. There is one cause that has far more personal weight for me, though, and for selfish reasons: the Juvenile Diabetes Research Foundation. JDRF was founded by the parents of children living with type 1 insulin-dependent diabetes, and for that very reason, all of the proceeds go to support type 1 research specifically. The majority of Americans living with diabetes have type 2, a condition of the same name and similar symptoms, but one that is potentially reversible. Type 1 does not have a cure...yet.

Every fall, JDRF hosts a series of Walks to Cure Diabetes across the nation. On October 4, my family and I will be participating in the Walk to Cure Diabetes at the State Capitol in Sacramento. Here are a few brief reasons why this is a good cause to support:

-Type 1 diabetes is an autoimmune condition requiring injected insulin and numerous finger pricks every day to stay alive
-JDRF has contributed more than $1.3 billion to Type 1 diabetes research
-JDRF was founded by the parents of children living with type 1, which means that all of its research resources go to finding a cure
-According to the National Institute of Health, between 850,000 and 1.7 million Americans live with type 1. Of those, 125,000 are under 19 years old.
-About 30,000 Americans are diagnosed with type 1 every year; of those, 13,000 are children.

Inspired? Here's how you can help:

You can donate to our team at www.jdrf.org
Click on "donate" near the tennis shoe marked "Walk to Cure Diabetes."
Our team is Malibu Pumpers: Team Julia Halprin Jackson.

Or, simply follow this link:

http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmid=87406823



In case you didn't know, I'm diabetic, and I really, truly appreciate your support.

2.10.01

Every year it's a bit different.

The first year, it was tragic. Every detail of February 10 was etched so clearly in my mind: the hard calluses on my palms from rowing competitions, the uncanny thirst in the back of my throat, that sinking feeling that I'd be doomed to adolescence forever. There were details that I'd attributed as somehow significant: the tulip painting on the hospital wall, the blue lights of the Tower Theatre mirroring the scene from the Sacramento River, the haunting chords of a Dave Matthews song. Everything is epic at 16 years old. What boys think is important. What teachers say could influence career choices. And what a body feels like--there are few things that dictate puberty more than the clash of control and instinct.

The second year, the memory was no less vivid. The illusion of control followed me to a more adult life--my freshman year of college. I circled the Lagoon that day, watching the gulls hem the coastline, realizing with a sudden finality that growing up meant taking ownership over imperfect organs.

Every year it changes. Those first three years, February seemed so mournful. I wrote poems to cells. I was still angry. I explained everything all the time to anyone who so much as blinked in my direction.

The fourth year I was abroad. That was the year I decided an anniversary didn't have to be sad. We landed on Tenerife, in the Canary Islands, at midnight, and the minute it was February 10, I felt something new: defiance, in the form of optimism. And then I got dressed for Carnaval and learned how to relax in Spanish.

This eighth year, February 10 means something entirely different. February 10 is pancreas day, Julia day, adulthood day. I feel extraordinarily lucky. Not everyone can pinpoint the loss of idealism to one specific day. There are so few moments of perfect drama in our lives--of actual, novel-worthy frustration, unembellished, random crises of faith. For so many people, personal tragedy is not something so easily calculated: how does one quantify depression? Or the injustice of homophobia? Of lost opportunity to some invisible, imperfect law of human nature?

Mine is an unfairness I can chart, plot, and review. Mine is a plague of minimal pain. Mine is never a solitary journey. Mine is the confusion that actual life plots for all of us--the rearrangement of meals, the reminder that nobody is invincible, that there are consequences to every decision. Diabetes has always been a lesson in opportunity cost and effect, and while I never really appreciated my high school economics class, these things are more easily understood when one measures them in the form of a finger prick.

Eight years later, I no longer wonder who I'd be without diabetes. I'd be someone else, with some other Trojan horse, accomplishing other things. It doesn't matter. I am who I am just as a tree is just a tree, and a dog is just a dog. There is comfort to be found in identifying as something or someone. I am a diabetic, but I am also a woman, and a professional, a friend, a daughter, a sister, a person with opinions and aspirations. And, at times, catapulting blood sugar.

February 10. I look forward to the year that there are even more important anniversaries than this one.