Diabetes, Et Cetera

we're in this together

Category: Uncategorized

Diabetes is, in many ways, a knowledge- and data-driven disease. As such, the more effectively information can be shared, the better the results will be for everyone involved. And yet the world of diabetes is fraught with communications failures, including poorly researched news articles, misdirected marketing and advertising campaigns, ineffective educational efforts, doctors and researchers losing their patients in jargon, policy makers underestimating the impact their decisions have on patients’ lives, and patients not recognizing (or effectively sharing) the wisdom and insights they’ve earned from having to live 24/7 with such a demanding and exhausting disease.

As a teacher and journalist, I specialize in communication and engagement — and I feel passionately about applying my background and training to the world of diabetes. Good communication is essential if we want to  foster productive dialogues, encourage new communications strategies, and disseminate information in a clear and meaningful way. Below are some examples of my own diabetes-related writing.

 

Thinking About Diabetes With Every Bite

“When I look at food, I don’t see food. I see sugar — in the form of carbohydrates — plotted on a multidimensional graph with proteins and fat and serving sizes and sickness and exercise and times of day.

I didn’t always do this. Before I received the diagnosis that I had Type 1 diabetes, I saw food as food, and ate it as such — simply, casually, with no real thought attached.

The winter of my senior year of college, after a bad cold and painful breakup, I began eating more — not to cope, but to feel full. I was hungry, always hungry. Hungry and thirsty and tired, piling my tray in the dining hall with pasta, cheese, dessert, getting up in the middle of the night to slurp water from my dorm’s bathroom faucet.

I gorged myself and yet my pants were looser, my arms thinner, my stomach flatter. One afternoon I threw it all up, convinced I had food poisoning. My stomach eventually settled, but my mind did not. The world swirled. I couldn’t stand without stumbling. On Feb. 17, 2001, I entered the hospital, and since that day, food has never been the same.”

What started as a writing exercise turned into an essay about Type 1 diabetes for the New York Times’ Well blog. It’s my attempt to capture what it’s truly like to live with this disease.

Education and Features

I enjoy using my journalistic training and experience as an essayist to help readers keep on top of interesting issues and developments in diabetes in language that’s relatable and easy to understand.  In addition to writing a variety of features for Sanofi-Aventis’s diabetes site, The DX, I also proposed the idea of the “Dear Diabetes” column, which answers common and/or quirky questions about diabetes. Among other queries: Do emotions affect blood sugar? Why is pizza so difficult? And, of course, why does insulin smell like Bandaids?

I also frequently do interviews and features for A Sweet Life.

Sample features:

How Does Your Diabetes Educator Make You Feel?

Mindfulness Meditation, and Diabetes Management

What is LADA?

The First Step Toward an Artificial Pancreas: An Interview with JDRF’s Aaron Kowalski

I also am keenly interested in improving diabetes education, particularly surrounding nutrition, and have several project ideas for which I’d love to find a partner.

 

Translating Science for the Public

“A sign rests on the windowsill in the office of Jeffrey Bluestone, director of the Immune Tolerance Network and the Diabetes Center at the University of California at San Francisco. Measuring nearly three feet across, it reads “Club Bluestone” in pink and blue neon. It’s the sort of artifact you’d expect to find in a bar. But Bluestone is a world-renowned immunobiologist; his father-in-law had the sign made for him in the late 1980s when Bluestone was working long hours in his lab at the University of Chicago. As the night wore on and their energy faded, he and his colleagues would turn out the lights, turn on the sign and, propelled by the power of Bruce Springsteen, push forward with their research.”

As you likely already know, auto-immune diseases like Type 1 diabetes or multiple sclerosis occur when your immune system  mistakes part of your own body for a foreign invader. In the case of Type 1, it’s when your body decides to kill off the cells that produce insulin, a hormone necessary to absorb the energy in your food. I think I speak for all Type 1 diabetics when I say that destroying these cells is not the body’s smartest move.

I was lucky enough to participate in a trial for a promising new drug, an anti-CD3 monoclonal antibody called teplizumab, that attempted to stop my system from killing off the rest of my insulin-producing cells. I wrote about the drug — and others like it — for Popular Science. The article, “Rebooting the Body,” is intended to make a complex subject comprehensible to the general public.

The Day-to-Day of Diabetes: Blogging at A Sweet Life

As everyone living with diabetes knows, there’s no vacation from a chronic disease. Every day brings new challenges, new successes, new frustrations, and new questions. I find catharsis through writing, and so I blog regularly at the excellent diabetes site ASweetLife.org.

A few sample posts:

Diagnosis

“When I was a senior in college, I lived many American women’s dream: I ate whatever I wanted to and lost weight. Not only that, but the more I ate, the more weight came off. Clothing was loose that had fit snugly just months before, and I had to use a belt to keep my favorite pair of pants from sliding off my waist. Of course, other strange things were happening as well. I was tired all the time, my head felt like it had been stuffed with cotton, I was ravenously hungry but nauseated after meals, and I kept finding tickets in my pockets for performances that I’d forgotten that I’d gone to.

I attributed my symptoms to having just been dumped.

“I can’t believe he broke up with me!” I said one night to Marie, my best friend and college roommate, as I gnawed on an oversized chocolate chip cookie. “I was supposed to be the one who hurt him.” I wiped a crumb off my chin, then ripped off a piece from a loaf of bread and smothered it with butter. “Do we have anything else to eat?”

It was as if I were on heavyweight crew. After waking up to a breakfast of two bananas covered in peanut butter, I ate a scone as a mid-morning snack before devouring three slices of bread with Muenster cheese, a cup and a half of chickpeas and yogurt with raisins, a plate of pasta and an ice cream sundae. And then only a cup of tea and a plateful of cookies stood between me and dinner, after which I could have my before-bed snack.

I also couldn’t stop drinking. Not alcohol, but water. Cups and cups of it. I drank upwards of a gallon a day and went to sleep fantasizing about the glasses that would await me when I woke up, ice cubes sparkling in the morning light. As a result, I constantly had to pee. I surreptitiously disappeared into the bathroom after every meal, a habit which, when added to my binge eating and weight loss, made it seem that I was bulimic. Lectures now necessitated an aisle seat; conversations could last no more than twenty minutes. Even sleep was not a refuge. Sabotaged by the four glasses I had drunk at dinner, I woke up upwards of three times a night on the verge of wetting my bed, and made up for the liquid I’d lost by lapping water from the bathroom faucet on my way back to my room.

Wondering if I were the only one suffering, I casually brought up my thirst in conversation, as if I were at a party trying to subtly gauge whether the host also did cocaine.

“You know, it’s the funniest thing,” I’d say at lunch, wolfing down a turkey club with extra mayonnaise. “I’m feeling a little thirsty. Is anyone else feeling, you know, a little thirstier than normal?”  When no one responded, I’d have to act like I wasn’t into water, either, and come up with another excuse for why I kept sneaking into the kitchen, where I’d duck behind the soda machine and chug another sixteen-ounce glass.

When it became clear that none of my other friends were falling asleep with visions of Italian sodas in their heads, I chalked my thirst up to my appetite (surely I needed liquid to balance out my food), and my appetite to my depression. The fact that I was losing weight while eating 7,000 calories a day was a bit harder to explain, but as I lost first five, then ten, then fifteen pounds, I hypothesized that I had found dieting’s holy grail: if you stopped worrying about your weight, it would go away on its own.

One afternoon, after weighing in at my lowest weight since eighth grade, I decided to reward my (lack of) efforts with a plate of cookies, as if I were on some bastardized carbohydrate version of the Atkins plan. I had started dating a new guy, I looked good in a bikini—I obviously deserved nine mint Milanos and seven chocolate-dipped grahams. Forget the fact that my vision was so blurry that I couldn’t see, and waves of nausea rippled through my body. I gave my new boyfriend what he called a “sweet kiss,” tottered back up to my room, vomited into our communal toilet, and collapsed into bed. As I lay on my back, staring up at the ceiling, I thought to myself, “Wow, I actually just tossed my cookies.” Then I needed to pee. . . . ”

 

You can read the rest of my diagnosis story on A Sweet Life. Suffice it to say that I no longer eat quite so many Milanos.