Hektoen International

A Journal of Medical Humanities

Defined spaces

Heather Alva
Palo Alto, California, United States

 

peanut butter
Photography by Piccolo Namek

“We’re already seeing signs of damage in the retina, but honestly, don’t worry about retinopathy; there have been so many recent medical advancements that I’m sure they’ll find a cure for diabetes in the next ten years.”

You smile and nod. You don’t tell the optometrist that a doctor, the one who diagnosed you, had already told you this back when you were wearing pink shoelaces at the tender age of ten. That the doctor had almost convinced you of this fact, of the concreteness of ten more years, of its distance and absoluteness—far enough away to seem true, but close enough to tell yourself that diabetes won’t last forever. Convinced that diabetes filled a defined space in your life, you temporarily believed that it would only coincide with your teen years and no further, only occupying those long years spent pining after Jesse, who played guitar and drove an Oldsmobile. Diabetes would become nothing more than a brief hiccup in your health—those years when you had to say “no, thank you” to the spumoni ice cream served at your annual field hockey banquet or when you would start to feel your fingers shake with low blood sugar in fifth period calculus and begin quietly plucking the lint from raspberry glucose tablets in the pockets of your hand-me-down Levi’s. You will look back on these things and think of them with the appropriate tenderness and understanding of how they shaped you, but they will still be separated from you by time. You will see them with that clarity of distance, possibly even granting them a nostalgic sigh. This is what you honestly believed.

Now you are twenty and like to think you’re not as gullible as you were ten years ago. That you’ve undergone all necessary rites of passage since then: thrown those glitter Barbie skates away, been disillusioned by a sloppy first kiss behind the church parking lot, experienced a first heartbreak at age sixteen by the only boy to ever write you a poem, lost loved ones, wondered if you’ll ever turn into your parents, and been accepted to your first-choice college. These milestones float to your memory just as vividly as the first time you understood how a kidney dialysis machine works, just as vividly as—during sophomore year of college—seeing an amputated toe that just hours before had been attached to an anonymous diabetic man and that now, pulled from refrigeration, sat alongside colon polyps and tissue samples. The pathologist you were shadowing (sensitive to the widening of your eyes and stiffening of your shoulders) had reassured you that whomever had previously been attached to that toe was probably a smoker who never took care of himself. Please don’t ever let me become an anonymous toe-less diabetic, you prayed.

For the first years after your diagnosis, you would wake your dad up in the middle of the night any time your sleep was interrupted by low blood sugar. Shaken awake and sweaty, you would will yourself out of bed in the middle of the night, saunter to your parents’ room, shake dad’s shoulder, and tell him you were low. The two of you had an established routine. He woke up easily, barely requiring prompting. Without a word, you would make your way to the kitchen through the dark living room that loomed with the high ceilings your mom had raved about when you first moved in, but which absorbed the space at night in a silence that almost draped itself over the furniture. The light clicking on was the loudest sound in the house, practically echoing through the air. You would sink into a chair at the kitchen table. Your dad, wearing the blue, long-sleeved, flannel pajamas your mom had bought him at Christmas would pour you a small glass of orange juice. By this age you could already see the gray in his thick wavy hair from where you sat at the table, nursing your orange juice. He would heat three corn tortillas over the gas stove like his own mother used to do for him and his brothers at their crowded dinner table in Santa Barbara, buttering them and placing them on a plate in front of you. Fifteen minutes following, you would test your blood sugar again. He would ask if you needed anything else, and then you would say “no, thank you,” and give him a tired smile and wander back to bed. He would turn the lights off in the kitchen, check to make sure the front door was locked, and return to his own bed where your mom was still sleeping, dragging the bottoms of his pajamas over the rug in spite of how tall he was. You remember the first time you woke up and it dawned on you that you should let your dad sleep, a quiet but significant revelation. You went to the kitchen to heat the tortillas yourself. Despite your best efforts to be quiet, he had heard you in the kitchen or had seen the light trickle in through the hallway, causing him to poke his head out to see who was awake. You had punctured the silence of the house, and its keeper had sensed the change. And when you sent him away, asserting that you were perfectly capable of heating the tortillas without him, he would say “okay, just let me know if you need anything” and return to bed, sentient and hurt.

When you started to become pretty in your early high school years, you let the boys you liked give you insulin injections. It was a special kind of intimacy, something your parents would never suspect or fear. You would show them how to inject the needle at a 45˚ angle into the pinched tissue on the back of your arm. You would elaborate on technique to make it seem a more dedicated task than you knew it to be, correcting the angle of the needle or asking them to push the plunger a little faster. The exchange was, in its own way, a canvas of trust, courage, gentleness, care. If the poke drew blood as a shot misaimed at any small blood vessel sometimes can, you would laugh and quickly wipe the burgeoning pool away, reassuring them that they had done just fine.

Boyfriends in college were later offered similarly defined spaces in your care. Sophomore year, you started running regularly because you knew that it made your body more sensitive to insulin. Billy ran with you, Billy, who lived in Denver and who loved The Daily Show, whom you dated for a year before leaving to study abroad for three months in Australia. Junior year, you had a hard time with lows. Chris would habitually carry sugar packets in his pockets. The two of you camped on the freezing northern California beaches and listened to NPR over long drives down Highway 1 towards Monterey until a year later when he left to make a documentary about the whaling industry in Norway. You were not interested in long distance. You suspect he would continue to tug sugar packets out of the Starbucks dispensers even now, purely out of habit. Senior year, you fell in love with Arda. He was born in Ankara, studied at a high school in Istanbul long before you met him as your neighbor across the hall. He taught you how to say armutum benim, my pear, askım benim, my love.

Waking up with low blood sugar would often result in fighting. Pulled from your own sleep, you would wake Arda up to ask for help. At first he was willing to help, dragging himself out of bed in those boxers you hated—the ones covered in hearts that some previous girlfriend had given him—pulling on a T-shirt and climbing down three quiet staircases into the blindingly harsh light of the kitchen beneath his dorm room. When he returned, his eyes still half-closed slits of eyelashes, he would present you with dried fruit or juice or a spoonful of strawberry jam, whatever he could find. “Jam? There were no grapes?” You would retort, “No bananas?” Low blood sugar had always been a time in your life when the forbidden high-sugar foods you were used to avoiding suddenly became necessity. It was a time for indulgence, not utility. Naturally, he would react. He would yell, frustrated. You would yell back, sometimes cry without even understanding why. What kind of person treats someone who only means to help them so poorly? Why weren’t you grateful? Appreciative? Why didn’t you just stick the spoonful of jelly in your mouth and hug your knees, holding as still as possible until the feeling left you and the whole thing was over? Why didn’t you ever learn to just passively wait for it to end?

It was hard to understand how easily you changed with the chemical reactions of your body, and, because it was even harder for others to understand, it became a character flaw. When your blood sugar rose fifteen minutes later and you were no longer fuming and shaking, your body would slip back into normality, exhausted from the endeavor of survival. You would be reminded by the silence of your surroundings that it was 4am. If there was a lesson in the notion that personality is too easily influenced by a collection of hormones, it was a lesson that you would learn alone.

You realize now that diabetes will never be neatly packaged enough to be cured. Even the emotional components that accompany a chronic disease are messy and permanent. Yet somehow you still want to know what it’s like to say “diabetes” without the word sticking in your mouth like peanut butter, reluctant to leave and always in association with a million other things, the way peanut butter brings memories of lunchtime recess jealousy for Kayla Smith whose mother always made her peanut butter and sugar sandwiches on Wonder bread with no crusts. You want to know what the word “diabetes” feels like to say whole and simple, like a marble spat out, retaining its precise shape, neatly and coldly spilling to the floor. Nothing about peanut butter is precise; even once you’ve finally scraped most of the sticky mess off your tongue, you can still smell the peanuts on your breath. You know that the taste in your mouth is charged with forever even though you’ve acclimated to a hope that expires and renews with each passing decade. You wait ten years, only to wait just ten more.

 


 

HEATHER LYNN ALVA was born in Sacramento in 1988 and lives in Palo Alto. She was diagnosed with diabetes Type 1 in 1998. After graduating from Stanford University in 2010 with a BA in Human Biology, she is now conducting clinical research in Stanford’s Department of Anesthesia. She will be attending medical school next year in Portland at Oregon Health and Sciences University, where she hopes to one day have the opportunity to write about her experiences in medicine from the perspective of a physician.

 

Highlighted in Frontispiece Summer 2012 – Volume 4, Issue 3

Summer 2012  |  Sections  |  Doctors, Patients, & Diseases

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.