"I wonder if there's anything here I can eat," I ponder as I walk through the cafeteria, peering into glass cases with rows of food I can't identify. My colleague launches into a description of all the foods available—burgers, fries, baked goods, parfaits and dessert bars, bags of chips and Cheezies and pretzels, candy and chocolate, coffee and hot chocolate, pop and juice and water. I feel a bit guilty as I decline each item in turn, either because I'm allergic or because it's too much sugar. After many minutes of looking and a debate about whether to bother asking if the yam fries are cooked with the potato fries, I finally settle on a cup of fruit salad and a water bottle.
We wind our way through the maze of tables and luggage as the ferry deck rumbles under our feet. After unloading our coats and bags onto empty chairs and plopping into an empty table, my co-worker digs into her burger and fries and I dig into my bag. My cup of fruit salad sits alone on the table in front of me.
"Aren't you going to eat?" she asks, pausing and peering at me over a yam fry.
"Yep. I just need to check my blood sugar," I say, my meter already out and lancing device poised to pierce my skin. A moment later there's a beep and 7.1 mmol/L flashes onto the screen. My co-worker continues to watch as I unclip my pump from my pocket and dial in my blood sugar, then pick up the fruit salad and rotate it in my hand, simultaneously positioning my cell phone to snap a photo so I can zoom in on the nutritional information.
"Here, let me read that," my colleague says, and I hand the container over.
"I need the carbohydrates," I say.
A moment of silence as she studies the list. "A hundred and fifty," she announces.
"No—carbohydrates, not calories." A few more moments pass as she reads the entire label aloud under her breath. "Ah, here!" she says as she reaches the information I'm looking for. "Fifteen grams." I ask if that's for the entire fruit cup or only half, directing her to look at the listed serving size near the top. It's a handful of moments before she finds the right line and says the serving size is half the cup. I dial the information into my pump.
"Why do you need all that information?" she wonders just as I'm about to press OK to deliver the insulin.
I turn my pump screen towards her so that she can see the
calculations displayed there. "I take different amounts of insulin each time I eat based
on how many carbohydrates are in the food," I explain. "I enter my
blood sugar and the carbohydrates into the pump, and then it recommends
an insulin dose. See? It's recommending 4.1 units, but I'm only taking 3.5."
She studies the screen. "Why wouldn't you take what it tells you?"
I hesitate. How to explain the complexities of diabetes ... It's truly not possible to fully convey the challenges of managing Type 1 diabetes without living it. But when someone asks—when someone is truly curious about what's going
on—well, then it's hard to turn them down. "Sometimes I override the pump
if I think my blood sugar might go high or low," I say. "For example,
this morning I woke up high, so I programmed my pump to give some extra
insulin over what it recommended. Now I think I might go a bit low since we're running around dragging suitcases, so I'm giving myself a bit less insulin."
"Why is your blood sugar
going so high and low?" she asks, her tone almost demanding. I explain that diabetes is sometimes hard to control—your body's
need for insulin changes on a moment to moment basis, and you've got to try and respond to and anticipate those chnages to adjust insulin doses. She asks what my blood sugar is and what's normal for someone without diabetes, and seems concerned when she realizes that 7.1 mmol/L is outside the normal range. She asks why it's high right now, tossing out a myraid of possible reasons. I smile rueflly and tell her that my blood sugar is not really that high at the moment—my reading that
morning had been 21.3 mmol/L. This time she actually gasps, struggling to understand how I can have such a high reading and not know what caused it.
"I don't know," I say, which is the truth. "Sometimes I just go high or low and can't find a reason why. That's just how Type 1 diabetes is sometimes."
At work, while I am not exactly outgoing about my health conditions, I
effort to hide them. My visual impairment was out as soon as my
co-workers saw me walk into the office with a white cane. My food
allergies were out when everyone asked why I wasn't eating at the
first office potluck. My diabetes was out the moment my colleague
said, "What's that gizmo?" as I bolused for lunch at a conference. My philosophy, at work and in the rest of life, has always been that the only way the general public will learn anything about these conditions is if they talk to real people about real experiences—not through books and movies and even media coverage, where misconceptions run rampant. So, when people ask, I invariably answer.
My colleague and I are quiet for a moment as we eat and as she processes the information I've just provided. Suddenly she looks up at me and asks, "So what happens if your blood sugar goes really high or low? What will happen? What should I do? Will you die?" The questions come out in a rush, as if it just occured to her that something serious might happen on this business trip.
I launch into a short explanation of highs and lows—that I need sugar if I'm low, and insulin if I'm high, but that if I ever pass out or don't answer my door or phone or am acting weird, she should just call 911. She goes on to ask about allergies—where do I keep my EpiPen, what should she do if I have a reaction? I try to keep the delicate balance between being serious but not scaring her; I don't want her to feel like she's responsible for me. After a few minutes our conversation gradually shifts to other topics.
I think back to the past few months of office potlucks and celebrations. Sitting with my own food while everyone else lines up to pile their plates with dishes others have brought. Sitting as a co-worker beside me tells me how bad they feel that I'm not eating the great food, and offering again and again to help me find something I can eat. Finally, with echoes of my childhood experiences flickering at the edges of my throughts, I accept. A momentary thrill rises in my stomach as I think about actually eating something from the table—but reality sets in as soon as the descriptions of the food come. Wheat, milk, and potatoes are in everything. I finally settle on a few plain veggies, feeling uneasy that they are sitting next to a container full of milk-filled dip. She offers other options—spicy chicken, spring rolls, a vegetable dish—but I don't know what's in them. I think back to a scary reaction I had over the summer—a meal which outwardly contained nothing I was allergic to, but which had chicken cooked in an oven alongside potatoes—and I can't risk it. I turn everything else down. I try, and fail, to think of a way to explain that it's more relaxing for me to eat my own food, which I know is safe, than to eat other people's great home-cooked food and worry that I might have an allergic reaction, even if it looks safe on the surface. I feel frustrated at my lack of words to convey this and my inability to teach my well-meaning colleague anything useful.
I watch my colleague as she sits across from me now. She had been one of those who had constantly
tried to convince me to eat foods, suggesting that I remove the
part that I'm allergic to so I could eat the rest. I told her repeatedly that
food allergies didn't work that way, feeling like she would never learn.
Then, one night in September I ended up in emergency until after midnight due to an allergic reaction. Still feeling horrible and sleep-deprived the next morning, I called in to work sick and explained the reason. Overnight, the cajoling from my colleagues stopped. Suddenly, people were cautiously inching plates of dangerous food away from me as I sat down and double-checking that things I ate were safe rather than trying to convince me to indulge.
Later that evening, after I've settled into my hotel room, I discover that I've forgotten the food I normally pack for trips. I dig a bruised apple and a crumbled cookie from my bag and eat them—I dodn't feel like going on a food hunt, which is difficult at the best of times, alone after sundown. The next morning at the hotel restaurant I order hardboiled eggs and bacon—grateful that I've recently added eggs back into my diet after further allergy tests, and that the restaurant staff seem knowledgeable about food allergies. I steel myself for the long day ahead with no food, since the catering had been arranged a week earlier and there was no time now to have a lengthy conversation with them about allergy requests at the last minute.
The workshop starts early the next morning. It's presented primarily by me, with my colleague flipping slides and attending to technical details. As noon approaches she announces that she's running to the store and will be back by lunchtime. I don't think much of it, thinking that we just need more refreshments for the afternoon session. Everything is going well, so I continue teaching the workshop without her.
When the catering arrives I sit and review the upcoming half of my PowerPoint presentation as the participants fill plates and eat. I'm just beginning to wonder where my colleague is when she bursts through the doors and plunks a bag down next to me. Before I have time to ask, she takes an apple, some Mandarin oranges, and a tub of So Delicious coconut yogurt and places them in front of me.
"Here, is this okay for your lunch?"
I'm literally speechless. Finally, I ask if these are really for me, thinking they might be snacks for the participants.
"Of course they're for you—you need to eat!"
Still hardly able to believe it, I thank her. Then I ask how she knows about coconut yogurt.
"You mentioned it the other day when I asked you how you could eat yogurt," she said. "You said you got it at Safeway. I noticed a Safeway down the street while we were driving here."
I'm grateful that she would even think of my problems—problems that don't affect her in any way. After thanking her several more times, I take my lunch and join everyone else to talk and connect before the afternoon session begins.
In that moment, my co-worker became someone who truly understood at least one small part of what food allergies are about.
As an educator, I should have known better. People need to learn on their own terms and at their own pace and in their own way. Each attempt at providing information, correcting
misconceptions, and relating experiences may be having a positive
impact, even if it's not immediately apparent and efforts seem futile. While I was getting annoyed with my colleague's misconceptions and feeling as if she would never learn, she—and all my co-workers—were indeed learning. Did they understand everything about my situation? Not likely, but that's an unrealistic expectation, anyway. The important part—what I needed to be reminded of—was that they were slowly soaking up the information I provided, and that's really all that I should expect of anyone who doesn't live )or work) closely with a condition or circumstance.