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.

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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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.

“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.