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”
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 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.
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:
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.
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.
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.
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!
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.”
Mi padre es irlandés y tiene un amplio repertorio de sabios refranes. Sonarán así porque lo son o porque escucharlos en su acento irlandés sureño hace que suenen de manera peculiar. Seguramente será una combinación de ambas cosas.
Mi padre dice muchas veces “a la gente le encanta opinar, no?” refiriéndose al cotilleo. “Pues déjales que opinen,” afirma en tono jocoso.
Pues sí, a la gente le encanta opinar, especialmente sobre lo que hacen y como viven los demás. De hecho, es un deporte internacional. Lo que a mí me resulta un poco triste es que las opiniones radican en una comparación y la comparación, ya sabemos, es el ladrón de la felicidad. Así se podría decir que las opiniones son su forma más innocua. Otra cosa que a la gente le encanta es hacer comentarios desagradables. ¿Y porque no? ¡Se pueden hacer en cualquier lugar, sobre cualquier cosa! Se puede comentar sobre la manera que tiene una madre de criar a sus niños, sobre la dieta que acaba de empezar Javi, sobre el estado o aspecto del piso nuevo de María o incluso sobre el hecho de que tu amigo Bob no esté alcanzado su potencial en la vida—¡qué triste! ¿No ves? No hay nada fuera de juego. Está claro que una enfermedad crónica también es objeto de crítica.
Continue reading “Como Enfrentarse a “Los Comentarios””
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”
Un hombre calvo con un cordel colgado a su grueso cuello pega una pegatina en mi teta derecha que pone “Dona Sangre!”. Llevo mis auriculares puestos, mis manos están sudadas, y mi música a tope, le muestro el símbolo de “OK!” y entro corriendo al centro de salud. Su boca aún sigue gesticulado pero yo solo escucho guitarras eléctricas.
Tengo 25 años y he vivido con diabetes tipo 1 desde hace 17 años. Hoy estoy acudiendo por primera vez al centro de salud de mi barrio en España, donde vivo y trabajo. Tengo más miedo que siete viejas. Temo que la administrativa nos eche a mí y a mi acento americano. Temo que, si me dejan ver un médico, me dirá que tengo que vender mi alma al diablo a cambio de insulina y tiras reactivas.
Continue reading “Nervios en El Centro de Salud”
Para leer este post en Español, haga clic aqui.
In August of 1998, you would have found me in the back seat of my parents’ white Chevrolet Celebrity, en route to Children’s Hospital in Philadelphia. I was 30 minutes away from being diagnosed with Type 1 Diabetes, 15 miles away from practicing insulin injections on fresh Florida oranges, four words away from a different life. Your daughter has diabetes, they said. Today when I attempt to reflect on this, 18 years now gone by, I think exclusively of a line from Kanye West’s 2005 hit “Gold Digger” which refers to the moment in which a man discovers that his kid ain’t his. The line is this one:
18 years, 18 years
And on her 18th birthday he found out it wasn’t his!
I don’t want to dig too deep today.
So I’ll just say this:
It’s been real, diabetes. You’re an adult now. If someone were to show up at my door today and say, whoops, we made a mistake, this disease isn’t yours! I wouldn’t mind. Not at all. But they won’t. And that’s alright. It’s been eighteen years and I’m still healthy and I’m still dancing (poorly, strangely, unabashedly—but dancing nonetheless). If the only thing that comes to my mind today is a wildly unrelated Kanye lyric, I suppose I’m pretty #BLESSED.
Si volamos durante un momento al mes de Agosto de 1998, me encontraréis sentada en el asiento trasero del Chevrolet blanco de mis padres, camino al Children’s Hospital de Filadelfia. Allí fue donde me diagnosticaron diabetes tipo 1 y donde pasé unos cuantos días, con mis dedos inexpertos, pinchando la piel fresca de una naranja con una jeringuilla de insulina a modo de entrenamiento.
Continue reading “18 años con DM1”