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.

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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.

MadridBirds

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.

WHAT DO PEOPLE EAT?

Every day, every single day, I ask myself that question: At breakfast while I run down the escalator, biscuit dust flying from my mouth. At lunch, when I spend money I don’t have on a sandwich I don’t need at the cafe across the street. I repeat the question at dinner when I stand in front of the stove making an omelet (again) and then on weekends when I wonder about the nutritional value of guacamole for dinner. I laugh about it on Sunday morning, when a friend informs me that omelets are a no-go for breakfast (they are “demasiado Americano”). He walks down, then up, my one-million stairs to buy bread for tostadas. Spaniards don’t do breakfast omelets. Duly noted.

Confession: I’ve spent the past few days googling variations of “What did Oliver Sacks eat every day?” (sardines), “What did Steve Jobs eat every day?” (apples and carrots exclusively, sometimes for weeks), and “How do I expend zero mental energy on deciding what to feed myself?” Sometimes I  go to the grocery store and spend twenty minutes staring at the canned goods aisle. My mother would probably say buy grains and lentils! And I’d say and then what? I want simplicity. I want four to sixteen cups of coffee a day, a library in my bedroom, and hair that I don’t have to wash. I want bagels to be as healthy and as easy to bolus for as salads are.

Diabetes responds well to routine, stability, and balance–especially when it comes to food. I, however, am a woman who knows no middle ground. I am either fiercely focused or I’m thinking about and doing eighty-two things at once. Feeding myself suffers from this wild disposition. Apart from sharing good food with people I love (the communal aspect of eating is one I can get down with, one-hundred and ten percent), preparing food just feels like a distraction from something else I’d rather be doing (you know, like writing this blog, researching, or dancing to Bey). I suppose that’s how Oliver and Steve felt, blessed be their genius’, and why they adopted such extreme diets.

So seriously, what do people eat? I love a good sardine. Apples and carrots are great, too, but I will not face a room full of adolescents running solely on VC and beta-carotene.  I’m thinking about using this corner of the interweb to document my forays into feeding myself so, if anyone reads this, please do advise: what’s your one go-to meal? Make it low-carb, cheap, nutritious and easy to prepare and I’m all over it. I (in case you haven’t guessed by now) am sixty percent omelet.

Until next time, CHEERZ!

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Move More, Ruminate Less

The last time I referred to myself as “a runner” I lived in an almost-arctic Steel City and I was angry at everybody. I ran in the cold and in the rain and after snowpocalypse when the streets were empty and the snow still white. My legs were firm. I was always surprised when I saw them in the shower. They looked like they belonged to someone else.

Quite a few years have gone by since then. I live under the sun in the center of Spain now. The most intense training I do on a regular basis is carry groceries up to my apartment (which, to be fair, is a fifth-floor walk-up, aka: no joke).

My winter vacation was strange. It rolled along without melancholy until one day I woke up ruminating on all the things I don’t have enough of: money, time, close friends to call for coffee. I lost my appetite, dreaded the mornings, wrote mostly of dreams, felt useless, and wished I was working. People call this “the winter blues.” I called it if I see one more bulging bag of gifts, I’m going to lose it. The only thing that might possibly have satisfied my homesickness (aside from going home) would  have been a dance with a Philadelphia Mummer. Any Mummer would have done. Wishing a Dunkin Donuts barista Happy Holidays! may also have have sufficed.

Those feelings spilled over into the new year and finally into a work week that dragged on and on, into mornings I greeted begrudgingly and nights I wondered why the hell it was I’d decided to move again? Eat your fruit & veggies, drink watertry to go to sleep earlycall somebody, go outside. Those things help. This morning I woke up late, fed and dressed myself, put on red lips and headphones and headed to Dunkin Donuts. To-go coffee has always been my remedy for homesickness in Spain. It feels wasteful and silly–and it is. But drinking from a cardboard cup once a year is worth the relief, however momentary it may be, that mediocre coffee and its memories of home provides. Cup in hand, walking through my new city, my favorite neighborhoods, I thought of running. Of solitude. Of those days when I didn’t mind the weather, when I ran to release, when I learned that my body existed for reasons other than being hated.

I have to train againI have to remember what that’s like.

This time around I’ll learn different lessons but run for the same reason: to remember how much exists outside of me, to live in words other than should, could, and would.

Some Nights Are Like This

The radiator clicks. Hot water runs through the pipes. I’m used to sleeping in cold rooms. This room isn’t freezing though–not usually, not for me. I’ve been colder is what I mean to say. But tonight I have a visitor who has blood much warmer than mine, so I’ve turned the heating on.

At 4 o’clock in the morning I’m peeling blankets off my body. My head hurts, my teeth are sticky, and vomit feels imminent. I know my number will be high, though part of me would rather not. It’s four-hundred and thirty-two.

Was it the mandarin oranges? Did I forget to bolus? I didn’t.
Was it the walk, or lack thereof?
The position of the moon, the way the waiter looked at me, a gypsy curse from the Puerta del Sol?

These questions and a line from a Lucia Berlin story are my 4 a.m. companions. “Fear, poverty, alcoholism, loneliness are terminal illnesses. Emergencies, in fact.”

I creak my way into the bathroom where the floor is cold. New pump site, just in case. The needle stings this time. I draw breath, squint my eyes shut, raise a middle finger high. This is so old. I’m so over this. (–> Insert un-publishable litany of swear words. <–)  I don’t feel like being kind to myself. I feel like being asleep. I’m graceless and exhausted and infuriated by the fact that this disease is always different, often unpredictable, never-ending. I’m mad that I won’t get these moments back. I’m worried about what monsters they might create, those pathologies I’ve known by heart for far too long.

Tomorrow I’ll be grateful and accepting again. Tonight I’m standing on the cold floor, in front of the bathroom mirror, flipping my body off. Some nights are like this.

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.