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.

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.

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.

“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.

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.”