More Than Diabetes

It’s the last day of D-Blog week! Its been amazing to meet some new writers and really enlightening to read perspectives from around the world.

Today’s topic is: More Than Diabetes. Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.

It will also be my shortest post of the week because I’ve got a flight to catch.

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Hobbies Pictured: Reading, writing, visiting new places with no plan. Also: emergency juice and gummies.

Hobbies not pictured: RuPaul’s Drag Race, dancing to Cher’s “Believe,” people-watching on the metro, discovering old man bars, wishing I could sing, going to concerts, annoying my neighbors by constantly blasting Van Morrison, laughing out loud whenever possible, and trying to write in Spanish.

I’ll be catching up and commenting on posts next week but right now I’m off to… Poland! If any of you have any must-see Warsaw sites or know where the must-eat pierogis are, feel free to let me know below.

From Fear to Gratitude

Day 4 of Diabetes Blog Week encourages us to share how emotion plays a role in our lives with diabetes. Today I’m re-posting something I wrote back in September because I touch on an emotion I felt fairly often growing up (and still sometimes today): fear.


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Para leer este post en Español, haga clic aqui.

My grandmother wrapped gauze around my grandfather’s wound. His leg had been amputated at the knee.

“Ew, that’s gross!”

I said it from the comfort of their velvet armchair, my own two healthy feet hanging over the cushion. My grandfather sighed.

I was diagnosed with Type 1 Diabetes when I was 8 years old and just a year later my grandfather passed away from complications of a long undiagnosed case of Type 2. I don’t know how children tend to confront death; grief is a world of its own even for fully grown adults. It may be simpler for kids, though. In the best of cases, they don’t feel any personal connection to the world of aging and disease. Perhaps children understand that death is final, but they remain infinite and immune to their own mortality.

At my grandfather’s funeral, I cried. I watched my father and my uncles carry his casket to the front of the funeral home and I wondered where he would go. After the family luncheon, my cousin and I named an old oak at the park our “praying tree.” We skipped around its trunk—praying, I suppose, although we’d never gone to church. I was nine years old and I knew that my grandfather was gone and that it had something to do with a disease that I also sort of, kind of had. However different their roots and treatments were, we both had diabetes. I was vaguely aware of the fact that their potential complications were the same. I also knew that I felt afraid, so I ran faster around the tree. I remained aware and afraid of that shared dysfunction as I moved through childhood and into adolescence. People said insensitive things to me that made me feel inadequate and weird and broken and I remembered those two words of mine—“that’s gross”—with shame. At doctors appointments, we talked about numbers and carbs and basal rates, but my fears went unshared. I didn’t want to have them, much less hear them out loud.

A week ago, I went to Marshall’s department store. There’s a JDRF fundraising table at the entrance. The familiar paper sneakers, signed by donors, cover a bulletin board and there are photos of people with diabetes from around the country—young and old—asking for a cure. A photo of a boy, age 7, is accompanied by a quote: “I want a cure so other kids don’t have to lose their carefree childhood like I did.” I read it, suck in air, feel my eyes well up, and walk fast to the shoe section, thinking do not cry at Marshall’s, you nutcase.

My short life has been a full one and I don’t plan on stopping. I have learned and made more mistakes than I can count. I’ve been nauseatingly happy and I’ve also known what it’s like to feel incapable of getting out of bed—for reasons strange and varied and, more often than not, unrelated to diabetes. Fears were unspoken in my household. They still are. I closed the door on them, found a bathroom to cry in, or a notebook to scribble them on. As I fumbled my way into adulthood, I learned to shift my focus from fear to gratitude—gratitude for all of the technology and education that has allowed me to live a life that would have been impossible just a short of ninety-five years ago; a life that still remains out of reach for many diabetics around the world. Gratitude for a community of people whose experiences differ from my own and offer me perspective. Gratitude, even, for those intense moments of fear and uncertainty. They are the feelings that have made me, for better or for worse, a person who respects each person’s story. I have met and loved and been inspired by people who have lived lives different and more difficult than mine. I have also met and loved people whose struggles drowned them—not because they were weaker, but for reasons as infuriating as lack of access and as senseless as “chance.”

Still, I remember those occasions when I felt I’d lost part of my carefree childhood and I wonder if we were not so inclined to grin and bear our fear, to breathe it into bathrooms and notebooks rather than those who love us, we might learn to accept ourselves sooner rather than later.

In Little Virtues, Natalie Ginzburg writes:

“There are two types of silence: silence with oneself, and silence with the rest of the world. Both forms make us suffer equally. Silence with oneself is dominated by a violent apathy that invades us down to our core, by contempt for our own soul, so reviled that we dare not say a single word to it. It’s clear that we must break the silence with ourselves if we want to try to break our silence with others. It is clear that we have no right to hate ourselves, no right to silence our own thoughts.

… Every day silence harvests its victims. It is a mortal illness.”

While every person’s journey is different, their ways of understanding life distinct,  I know we all benefit from being able to say “I’m scared, too,” from having tough conversations in order to make room for the ones that recognize all we’ve gained, and everything we stand to learn.

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.

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.

Don’t Forget To Breathe

Don’t know what Diabetes Blog week is? Head over to Karen’s blog to read about it and check out this year’s topic list. I’ll be participating this year and I’m looking forward to reading and writing along with the rest of you! 


Today’s topic isDiabetes and The Unexpected.

Being prepared for the unexpected is not exactly my forte. Given the option, I’d never have a plan. I’d toss my emergency bags and my to-do lists and I’d live footloose and fancy free in a world where nothing ever went wrong. But things do go wrong in this world of ours, of course. Insulin goes bad, batteries die, reservoirs leak, and cannulas bend. You’re so excited about going to a salsa bar that you run down the stairs, fail to notice your pump tubing trailing behind you, get caught on the railing, and lose the battle (what? who did that happen to?) Your relaxing swim in the sea turns into a disaster when a grain of sand makes itself at home in your infusion site and you finally understand the purpose of those cute plastic cap covers that Medtronic includes in every set. A tiny demon called Norovirus takes up residence in your gut and you spend twenty-four hours praying to the porcelain god and wondering whether you’ll ever feel alive again. Ketones emerge and hang around and you end up abandoned in the back room of a Spanish ER, hooked up to an IV.

Sure, eighteen years of Type 1 Diabetes have by default taught me to be more responsible and to consider the possibility of an apocalypse or electrical failure every time I step onto the metro, but I don’t feel particularly qualified to give tips on planning for the unexpected since I am so often an improv actress in my own life with diabetes. I always carry syringes, juice boxes, and extra insulin with me. Many of my coat pockets are stuffed with individual sugar packets, or the remnants of them. Illness unfortunately tends to be difficult to avoid and can quickly get out of hand, so I set standards for when and where to seek help.

My best advice: always carry twice as many supplies as you think you’ll need (especially when traveling), always be open to the possibility that something ridiculous will happen, and then be ready to forgive yourself when your reactions are less than poised. Oh, and don’t be like me. Emergency supplies are best kept in one or two cute little bags, not strewn into separate corners of your backpack (I’m working on it, OK? It’s on my to-do list). Now take a deep breath and trust yourself.

On Mother’s Day, A Thank You

I don’t think I will ever understand or fully appreciate everything my mother has done for me unless I have a child of my own someday. As I’ve gotten older, I’ve experienced brief moments when the extent of her selflessness hits me… but I know I’ve barely brushed the surface.

When my mom fought for my right to carry my medical supplies with me and care for myself in middle school, it never occurred to me that she could have done anything otherwise, that parents existed who wouldn’t or couldn’t be as involved in their child’s care as she was. I learned to write and to fight sitting next to her in front of our old PC, typing out letters to school administrators and later to insurance companies.  As a young girl who felt different and broken, it meant everything to me to know that there was one person who would never make me feel like a free and beautiful life of my own was out of reach.

I remember her sleeping body in the chair next to my bed at Children’s Hospital. It wasn’t until much later that I wondered what it must have been like for her to watch me become ill and to know that there was no way I would ever again be the carefree little girl who existed before.

“Could it be something else?” I’d heard her ask the doctor.

How difficult it must have been for her to accept the incongruity of youth and illness in one of her own children. It was a long time before I thought of my disease as anything but my own and years before I realized what it must have meant for her, the amount of mourning she must have done behind closed doors, and the amount of work she did to make sure my childhood still felt normal.

On the rare, hormonal occasion when I consider the idea of having a child of my own someday, I immediately think: no way! I would die of anxiety! I’d have to bubble wrap my child and raise it on a hippie commune. I don’t know. What do people do these days? I can’t imagine how much more intense that worry about protecting a child becomes when illness enters the picture, when all of life’s precariousness becomes so painfully real. My mother managed it somehow, though, and I could not have asked for a better teacher.

We didn’t always see eye to eye, of course. I was a teenager once. Sometimes I still am. I wasn’t always the happy-go-lucky, accepting person that I am today when it came to diabetes. It took a lot of work to get here and I’m afraid it would have taken a lot more were it not for the gifts my mother gave me very early on: independence, the tools and knowledge I needed to take care of myself, and the freedom to find my own way.

To my Mom, to all D-Moms and to Dads and Caretakers by Other Names, I don’t know how you do it. But thank you. Thank you for all the work you put in behind the scenes and thank you, especially, for trusting us enough to let go.