Move More, Ruminate Less

The last time I referred to myself as “a runner” I lived in an almost-arctic Steel City and I was angry at everybody. I ran in the cold and in the rain and after snowpocalypse when the streets were empty and the snow still white. My legs were firm. I was always surprised when I saw them in the shower. They looked like they belonged to someone else.

Quite a few years have gone by since then. I live under the sun in the center of Spain now. The most intense training I do on a regular basis is carry groceries up to my apartment (which, to be fair, is a fifth-floor walk-up, aka: no joke).

My winter vacation was strange. It rolled along without melancholy until one day I woke up ruminating on all the things I don’t have enough of: money, time, close friends to call for coffee. I lost my appetite, dreaded the mornings, wrote mostly of dreams, felt useless, and wished I was working. People call this “the winter blues.” I called it if I see one more bulging bag of gifts, I’m going to lose it. The only thing that might possibly have satisfied my homesickness (aside from going home) would  have been a dance with a Philadelphia Mummer. Any Mummer would have done. Wishing a Dunkin Donuts barista Happy Holidays! may also have have sufficed.

Those feelings spilled over into the new year and finally into a work week that dragged on and on, into mornings I greeted begrudgingly and nights I wondered why the hell it was I’d decided to move again? Eat your fruit & veggies, drink watertry to go to sleep earlycall somebody, go outside. Those things help. This morning I woke up late, fed and dressed myself, put on red lips and headphones and headed to Dunkin Donuts. To-go coffee has always been my remedy for homesickness in Spain. It feels wasteful and silly–and it is. But drinking from a cardboard cup once a year is worth the relief, however momentary it may be, that mediocre coffee and its memories of home provides. Cup in hand, walking through my new city, my favorite neighborhoods, I thought of running. Of solitude. Of those days when I didn’t mind the weather, when I ran to release, when I learned that my body existed for reasons other than being hated.

I have to train againI have to remember what that’s like.

This time around I’ll learn different lessons but run for the same reason: to remember how much exists outside of me, to live in words other than should, could, and would.

Some Nights Are Like This

The radiator clicks. Hot water runs through the pipes. I’m used to sleeping in cold rooms. This room isn’t freezing though–not usually, not for me. I’ve been colder is what I mean to say. But tonight I have a visitor who has blood much warmer than mine, so I’ve turned the heating on.

At 4 o’clock in the morning I’m peeling blankets off my body. My head hurts, my teeth are sticky, and vomit feels imminent. I know my number will be high, though part of me would rather not. It’s four-hundred and thirty-two.

Was it the mandarin oranges? Did I forget to bolus? I didn’t.
Was it the walk, or lack thereof?
The position of the moon, the way the waiter looked at me, a gypsy curse from the Puerta del Sol?

These questions and a line from a Lucia Berlin story are my 4 a.m. companions. “Fear, poverty, alcoholism, loneliness are terminal illnesses. Emergencies, in fact.”

I creak my way into the bathroom where the floor is cold. New pump site, just in case. The needle stings this time. I draw breath, squint my eyes shut, raise a middle finger high. This is so old. I’m so over this. (–> Insert un-publishable litany of swear words. <–)  I don’t feel like being kind to myself. I feel like being asleep. I’m graceless and exhausted and infuriated by the fact that this disease is always different, often unpredictable, never-ending. I’m mad that I won’t get these moments back. I’m worried about what monsters they might create, those pathologies I’ve known by heart for far too long.

Tomorrow I’ll be grateful and accepting again. Tonight I’m standing on the cold floor, in front of the bathroom mirror, flipping my body off. Some nights are like this.

Some Things You Might Do

Lay in bed with a bag of Doritos, listening to R.E.M’s “Everybody Hurts” on repeat.

Take a long walk.

Participate, halfheartedly, in optimistic conversations with coworkers.

Listen.

Don’t listen.

Dance to Jackson Browne’s “Doctor My Eyes.”

Laugh:
–When a 12 year old Spaniard informs you “the results were caca, mierda, poop.”
–When you overhear a man on the metro saying “the only problem the US has is their vacation times.”
–When the old Spanish dear at the newsstand declares “We have a new president!”

Wonder what’s next?

Light a candle.

Read reactions that are more beautiful and fair than anything you’re capable of producing.

Sit with it.

Take heart, take stock, take a break.

Hey, are you aware? It’s November!

Every time November rolls around I think of a line from Amy Winehouse’s “Me & Mr. Jones.” “What kind of fuckery is this?” she sings. She’s referring of course to the fact that her boyfriend made her miss the Slick Rick concert (note: never keep a girl from her music).

This month always takes me surprise, hits me right in the gut. Two months away from a brand new year, Thanksgiving around the corner, the horror of Halloween behind me, and the only thing my heart beats is “what kind of fuckery is this?” How does this happen year, after year, after year? Alucinante! the Spaniards might say. But here we are in the reality of November which also, it just so happens, is Diabetes Awareness Month. DAM!

Since I started writing about life with T1D again, I’ve been thinking a lot about what awareness means to me. When I think about awareness, I think about a lot of things. Too many to write about in one post. One that I think about more than others, though? The vast majority of people with diabetes who haven’t been as fortunate as I have. I was lucky enough to be born in a place and into a family that afforded me the luxury of worrying and thinking about things like the philosophy of illness, in a place and into a family where fighting for technological tweaks and tools that would make my life easier was the norm. I think about that and, while fighting for those things has its place, too (after all, tech progress is invaluable), my awareness focus today falls on those who don’t have the privileges that I do.

Living with diabetes is difficult and demanding in the best of cases but without access to the tools necessary to manage it, it’s a death sentence.  I want people to be aware that there are many people with diabetes in the world who don’t have access to or can’t afford those tools. Insulin, test strips, and the education to know how to use them are absolutely vital.  It is 2016 and people are dying and suffering from a disease that has been manageable since 1922. What kind of fuckery is that?

Because Type 1 International sums it up succinctly, this is the part where I refer you to the Diabetes Access Charter. The world is overwhelming and the advocacy world even more so (there’s so much fixing to be done). The easiest thing one can do, though, is show solidarity. So this November, please take five minutes of your time to read and sign the charter.

When It All Goes Wrong: A Horror Story

pumpkinbanner

Halloween is upon us, so why not break the blog silence with an awful story? Like the one about my recent return to Spain?

I’ve traveled plenty and I’ve managed to do so with problems no greater than my seat-mate falling asleep on me, drooling on myself, or missing an occasional bus, but this year was different.

Continue reading “When It All Goes Wrong: A Horror Story”

Because awareness matters…

I was inspired to write this after reading Meri’s post yesterday, which she followed up with this wonderful post today with more perspectives from the DOC, and real ways you can help.

There are certain things I don’t like to discuss on the internet—namely, anything involving my love life or my political leanings. It’s not because I believe we shouldn’t discuss these things (actually, wait, my love life will never be up for discussion, ya weirdos). Where politics are concerned, however, I prefer to stay out of it. The people of the internet carry pitchforks and these topics are so hugely complex that I don’t think status updates do them justice. Even worse, comment sections tend to skew towards arguments between Your Drunk Uncle and Your Communist Cousin: two people who might kill each other at Thanksgiving, but most certainly will if given the opportunity to do so from behind the comfort of a screen. You guys know The Internet—you’re on it, after all. It can quickly turn into a whole lot of people talking AT each other, rather than a place to gain perspective, understand, and respect one another (I truly believe that the internet can be that when it has its best face on, which is why I’m on it—and also for this).

Continue reading “Because awareness matters…”

“If there is to be a panic, let it be organized.”

If any of you are regular readers (are you? if so, heyyyyy!), you’ll have noticed that I try to post here every Wednesday. I have a lot of things I want to say about living with a busted pancreas. But I’m also a (fairly functional) perfectionist and I don’t like to let ideas out into the wild until they’re fully formed, with legs and wings and all of that stuff they need to fly.

Today is one of those days when stress has edged its way into my consciousness, effectively squashing my ability to write anything that I don’t want to throw into a deep dark well. I recently accepted a job offer and now I’m calf-deep in paperwork (it could be worse) and organizing a move to the Spanish capital with that annoying, low level nausea that always accompanies change. My breaks involve drinking coffee (I should stop, I really should) and dancing to Sia songs, half wishing I’d grown up to be Maddie Ziegler. Also, this song?

I DON’T KNOW!

So this post is just to say: I’m really sorry that my brain won’t let me organize anything today. My meter is screaming at me: giiiirlll, pleaaaaseee chill!

If you have any fail-proof stress relievers please do Tweet, comment, or send me a raven.

Books That Helped Me Live a Better Life

A few DSMA chats ago, it came to my attention that the DOC is a literary bunch. One of the chat prompts was “describe your ideal Friday night” and at least 70% of the responses involved a good book (also, wine). So I thought it would be fun to share four books that have, in one way or another, influenced my life with diabetes. Without further ado:

  1. East of Eden by John Steinbeck

    What does John Steinbeck have to do with diabetes? Objectively, very little. I read this novel in high school between algebra equations, during lunch, and before bed (I was a really cool teenager, obviously). One quote in particular changed the way I approached daily life with diabetes:

    “But ‘Thou mayest’! Why, that makes a man great, that gives him stature with the gods, for in his weakness and his filth and his murder of his brother he has still the great choice. He can choose his course and fight it through and win… It is easy out of laziness, out of weakness, to throw oneself into the lap of the deity, saying, ‘I couldn’t help it; the way was set.’ But think of the glory of the choice!”

    Ever adept at taking things out of context, the words were like a light-bulb going off for me: hey, I can choose how I react to and confront life with T1. I had a tendency, and sometimes still do, to focus on the bad and weigh myself down with worry and resentment about all the things that weren’t right about being a young person with diabetes. I’d often avoid checking my blood sugar because each “bad” result felt like a personal failure, a prediction of a future that I had no power to change. After reading East of Eden, I thought of this quote often. I tried to embrace the idea that, although I didn’t have the power to cure myself, I did have the power to choose how I confronted and lived my life.

  1. Illness: The Cry of the Flesh by Havi Carel

    Part of Routledge’s The Art of Living series, Carel’s slim volume is a meditation on living with illness told through the lens of philosophy. Carel relates her account of living with a rare, progressive lung disease called lymphangioleiomyomatosis(LAM) while incorporating ancient and contemporary philosophy to explore what it really “means” to be ill, and how well-being can be found within illness. She even touches on language and the way that HCPs can deeply affect patient experience. This book is not your crusty, elbow-patch-wearing professor rattling on about a bunch of old dead guys. It is not that hipster you sat next to in Russian Lit saying I think Nietszche would agree that a woman’s significance lies in the fact that she can give birth to a superior, intellectual man. Its philosophy, a discipline that suffers a lot of ‘Does This Subject Matter?’ debate, that is alive and in dialogue with lived experience. It matters here insofar as I think anything else does: by enriching and improving the way we understand our lives.

  2. The Man Who Mistook His Wife For a Hat by Oliver Sacks

    I already mentioned my love for Sacks when I wrote about Spanish health insurance. This was the first book I read of his and I value it, first of all, because it’s fascinating. Sacks recounts the case histories of his neurologically atypical patients in a humble, human way that is worlds away from the cold, purely scientific modern day case history. Many of the stories speak to what Carel wrote about in Illness: finding well-being within a life that is irrevocably changed by and experienced through disease. I have always been fascinated by the ways in which humans adapt to objectively negative circumstances and find ways to accept and assimilate the “atypical” parts of life. That is, of course, always the hope: that we find ways to be at peace in our imperfect bodies.

  3. Lady Oracle by Margaret Wood

    This one has nothing to do with diabetes. Absolutely nothing. But I have a soft spot for novels about women who run away, Margaret Atwood is a dream, and laughter is the best medicine.

    So, DOC, what do you read? Diabetes related or otherwise, I want to know what’s on your bookshelves!

Should You Lose Your Mind Over That Dumb Comment? A Handy Flowchart.

Para leer este post en Español, haga clic aqui.

My father is an Irishman and he is full of strange, whimsical sayings that sound incredibly wise either because they are, or because hearing them said in his Southern Irish lilt just makes them sound that way. Surely it’s some combination of the two.

“People love to wonder, don’t they?” is his default response to hearing about gossip. “Well, let them wonder.”

People do love to wonder, mostly about what other people are doing and the myriad of ways in which they are living. It’s an international sport, in fact. The sad part is that wondering is often just comparison (that silly thief of joy) in its early, more innocuous stage. Another thing that people love to do, which often occurs after wondering, is make unwelcome comments. And why not? You can do it anywhere! About anything! You can comment on how Nancy is raising her children, you can comment on the diet that Javi just started, you can comment on the state of Jenny’s new apartment and you can even comment on how your best friend Bob just isn’t living up to his potential—how sad! See? Nothing is off limits! Naturally, then, a chronic illness is fair game. I wish I’d had a handbook as a teenager and even in my early twenties about how to deal with people who say dumb things re: diabetes. Would I have listened to it? Not sure. Handbooks aren’t really my thing but I think in this particular case a bit of reductive how-to may have served me well.

Continue reading “Should You Lose Your Mind Over That Dumb Comment? A Handy Flowchart.”

Oliver Sacks and Spanish Social Security

Para leer este post en Español, haga clic aqui.

A bald man wearing a lanyard slaps a “Donate Blood!” sticker onto my right breast. Headphones in, hands sweaty, and my music turned up, I flash him the “A-OK!” symbol and scurry into the health center. His mouth is moving but all I hear are electric guitars.

I am twenty-five and I have lived with Type 1 Diabetes for seventeen years. Today I am using the national health system in Spain, where I live and work, for the first time. I am more terrified than any human adult should be. I’m afraid that the woman at the front desk will kick me and my American accent out. I’m afraid that, if I am allowed to see a doctor, she will tell me that I must sell my soul in exchange for insulin and test strips.

Continue reading “Oliver Sacks and Spanish Social Security”