The Cost of Chronic Illness: Two Worlds and Two Kinds of Disbelief

In November I stayed up all night with two boys and a bottle of bourbon, following the US election results. There may have been popcorn involved too, but my memory is foggy. At six o’clock AM or some equally ungodly hour, the race was called. We had by then watched a clip of Donald Trump on WWE Smackdown upwards of thirty times—La Sexta TV played it all night alongside the electoral map and “Latinos for Trump” footage from New York. I had watched Pennsylvania turn red and slumped defeated into a sofa that wasn’t mine. I took the metro home then, even though what I really wanted were churros and to be dreaming. Line 5 was scattered with early morning commuters who had lived a night much different than the one I had. At my stop, a man was screaming “noooo” and vomiting into a trash bin. A Spanish woman stood at the news kiosk in front of my house and announced “we have a new president!” I climbed my stairs and went to sleep. When I woke up in the afternoon, I ate a bag of Doritos for breakfast. It may have been raining. In my memory it is. I listened to R.E.M’s “Everybody Hurts” on repeat. My two worlds, the one I’d left on the other side of the Atlantic and the one I live in now, both felt surreal.

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See, although I live in Spain now, I grew up in the United States. I am among the fortunate in that I never went without the medical care I needed growing up, but I remember my mom gathering letters from doctors and spending countless afternoons on hold as she petitioned our insurance company for more test strips. As an 18-year-old I wrote appeals to the same company for CGM coverage, a technology that was then in its early days.  In the most dramatic of all my visions, I saw my future divided: Life as a student with insurance coverage and then life after insurance coverage ended, at which point I’d probably have to sell my soul and my dreams to some company I didn’t really want to work for and spend hours on the phone begging insurance representatives for the basic supplies I needed to live. I came from a culture of fighting, so when I went to the doctor in Spain for the first time I was prepared for battle. Instead I encountered a system that found the idea of not taking care of me barbaric. I got the appointments and the supplies I needed immediately, at no extra cost, with no questions asked. I walked out of the health clinic and felt a strange mixture of disbelief and gratitude.

I’ve now used Spanish public healthcare for a year and I still experience that sense of disbelief every time I walk into an office and walk out with everything I need. No one calls me looking for money. No surprise bills show up in my mailbox. It is still difficult and counter-intuitive for me to not ask my doctor if my insulin and pump supplies are really included in my health plan. When I leave the office, I still get the urge to hug everyone I see on the street and to give every last cent I have to this system that has given me something I never felt in the United States: security.

Sure, things are different here. They’re rougher around the edges sometimes. When I go into the health clinic for blood work, there’s no system to know when its my turn. “Who’s the last in line?” I have to call out to the room, which is usually full by 8AM. Sometimes there are Spaniards waving around tubes of their own urine: “Can you take this?” they yell at the lab techs, “I’m gonna be late for work!” Sure, my primary care doctor could stand to work on his bedside manner and one might argue that the ticket systems and bare-bones waiting room decor at specialists’ offices are impersonal and unwelcoming. I’d argue that inaccessibility is more unwelcoming. I’d trade the ambiance fountains and comfortable recliners at my Philadelphia waiting room in a heartbeat if it meant that everyone who needed to access medical care, could.

Six months have passed since that election night and I still watch from afar in disbelief as politicians in my country vote to roll back legislation that protects people with pre-existing conditions. I feel anger and shame when I read stories about patients with diabetes who for economic reasons are unable to access the very non-optional medicines and education they need to live. Granted, I have a personal interest in the topic. My family, my friends, and maybe my future are in the United States. But every living, breathing human, healthy or otherwise, should have an interest in healthcare. Congressman Joe Kennedy’s response to the recent approval of the AHCA in the House of Representatives illuminates that:

“…every single one of us, one day, will be brought to our knees by a diagnosis we didn’t expect, a phone call we can’t imagine, and a loss we cannot endure.

So we take care of each other. Because, but for the grace of God there go I one day. And we hope that we will be shown that mercy too. It is the ultimate test of the character of this country confronting our chamber today — not the power we give the strong, but the strength in which we embrace the weak.”

Policy affects all of our lives and there is perhaps no population that understands that better than those who are in need. My experience is peculiar and privileged. I come from the richest nation in the world and yet I am still surprised and humbled to feel human in a healthcare system. I have America and a fortunate but altogether chance set of circumstances to thank for my education and the life I lead today, but I have Spain to thank for the relief I feel in knowing that my life and my misfortunes are not for profit. Spain’s system is far from flawless. It has its own unique challenges to face, but it is right in one thing: its humanity. I hope that, with every voice and every story shared, we can get closer to that in the United States.

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The Many Mantras of Checkup Season

Excerpt from Wislawa Szymborska’s “Life While-You-Wait”

A quick update on my last post:

As it turns out, people eat a lot of things. Vegetables, for example, chopped and thrown onto a pan with olive oil and then into a bowl over a bed of very trendy quinoa. Feta cheese, for example, which was likely enjoyed by the Greek Gods and just so happens to be scrumptious in salad, couscous, or as a midnight snack with tomato, olive oil, and pepper.

Good news? I’ve gotten better at nourishing my body while still honoring my culinary laziness.

Bad news? I’m still the sort of person who would rather dig into a meal than photograph it, so there are no pictures to prove that I’ve consumed anything other than omelet lately. I have no recipes to share, either. That’s because these dishes are underwhelming and largely self-explanatory. Said recipes would read as follows: “cut some veggies up (however you please), toss them in a pan (with care and love), dance around (to something Irish), then eat.”

So. There you have it.

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Life rolls on. April arrived with all her beauty to the city of my dreams and so too did the pesky word procrastinator (see: me, see also: will I ever learn?). I finally requested a health card from the clinic in my new neighborhood today.

Length of time I avoided this task: six months.
Length of time it took me to complete: between eight and twelve minutes (walk to health center and brief pause to admire an alleyway included).

I have an appointment with a new doctor who will write me scripts, schedule blood work, and refer me to an endo and an eye doctor for those oft-avoided,  anxiety-inducing yearly checkups that make me repeat the same mantras year after year after year:

“Knowledge is power.”
“You got this.”
“You’ll be fine, girl.”
“If you’re not fine, you’ll still be fine.”

And then the pep-talks:

“You’ve conquered monsters with uglier names. If it turns out that you’re not fine (but I’m sure you’re fine, don’t worry, you’re totally fine), you’re more than qualified to confront whatever stupid senseless thing life may have to offer. Fear is fine. Laying on the floor is fine, too, but you probably won’t have to do that because YOU ARE FINE. YOU ARE TOTALLY FINE. It’s a DOCTOR’S VISIT. Ok, fine, it’s three doctor’s visits, but you know what? That’s great news. You love people-watching and the culture of the Spanish waiting room is the best thing that’s ever happened to you. This is gonna be fantastic.”

“You haven’t always done your best but that’s because you’re not a machine and that’s FINE! No, it’s more than fine. You know how angry those self check-out scanners at the grocery stores make you? Those are machines. They’re the worst. They’re unforgivable. You’re not the worst. You are forgivable.”

Diabetes: that sometimes quiet, sometimes clanky chronic illness that makes otherwise sane young women talk to themselves out loud.

Never quite fully prepared for anything and lately certain that I wouldn’t actually want to be, I let anxiety have its moment. I admire the beautiful building that houses my new health clinic and think about nine-year-old me at a dingy office complex in Pennsylvania, unaware that one day she’d be walking into this place, privileged enough to go to the doctor even when she felt just fine.

When It All Goes Wrong: A Horror Story

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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…”

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!

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”

A Really Formal (Re)Introduction.

Para leer este post en Espanol, haga clic aquí.

Seven (!) years have gone by since I last wrote in what was at the time known as The Diabetes Blogosphere (do they still call it that? I don’t know anything).

So who am I? Here’s the short story: I’m half-American, half-Irish and, after living in Spain for quite some time, 100% confused. So although I’ve titled this corner of the internet A Diabetic Abroad, this particular abroad—Spain—is now more like a second home for me than anything else. It’s the place where my twenties are happening, after all. But anyway let’s not get too technical about it; I will never flip a tortilla de patatas with the ease of a true Spaniard.

So, why am I back on the bandwagon? I have many reasons, but let’s discuss 3 of them.

Continue reading “A Really Formal (Re)Introduction.”