Lunch with a Wannabe Shaman

It’s Day 3 of Diabetes Blog Week and Today’s topic is: The Blame Game.

“…Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!”

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Imagine this.

I’m at a business lunch in Spain. It’s not my business at all but I was invited anyway and I never pass up a ribeye steak. Everything is going as well as well can go despite the fact that the boss is insisting that we take a selfie together and the whole thing feels more like a reenactment of a Mad Men scene than a productive business meeting. And then one of the project managers starts talking about natural healing and how all medical problems are rooted in childhood. He mentions diabetes and asks if we know what it is. This is where I chime in.

“Yes, I’m diabetic.” I tell him.

Judging by the complete quackery of what has been said so far, I feel pretty certain that I will soon have to stop myself from crying or screaming or both. I’m not wrong. He goes on to inform me that my diabetes was caused by a lack of love in my parents’ marriage and that I have the power to cure myself with my mind! During eighteen years with diabetes, I’ve heard a lot of suggestions: eat kale and only kale, just diet and exercise!, pray, do four handstands every morning, only wear cotton, eat cinnamon. This one was by far the worst.

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Since this was three years ago, my Spanish was good but not great. I didn’t have a solid grasp on the language at an academic level but I did my best to respond anyway.

I informed him of a few things:

  1. Before the discovery of insulin in 1922, diabetic children actually withered away and never reached adulthood.
  2. There are numerous documented cases of death in diabetic children whose parents discontinued treatment and opted to pray instead for divine intervention.
  3. My own reality: I have lived with this disease since I was eight years old and it’s not going away anytime soon.

He insisted. He knew the facts, “but all ailments are really just a matter of the mind.” I was struggling not to cover my ears and roll onto the restaurant floor as I told him I didn’t respect what he was saying. The boss corrected me. I didn’t agree with what he was saying, that’s all.

Here’s the thing. Not only did I not respect what he was saying, I found it extremely offensive and irresponsible for someone to suggest that the children who are still dying from this disease today and the adults who are paving the way as the first generation of diabetics who actually reach retirement simply aren’t thinking hard enough. I didn’t respect it three years ago and I certainly don’t now.

The game part of this post is fun but but to be honest I’d probably turn this guy into a puppet and then relegate him to the bottom of the toy chest. Given the chance, I’d go back in time as a slightly-more-eloquent, calmer woman and I’d try to have the conversation again.

My method: I teach when I can and try very hard not to lose my mind.

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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.

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.

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

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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…”