Claiming Chronic

This is how it is every day. One small white pill. Two slightly larger yellow pills. Four syringes filled with clear liquid, drawn and depressed and redrawn to eliminate any air bubbles. Four pricks of the finger producing four drops of blood, plump, round and bright red. Cross your fingers and wait, and hope for 80 to 120 milligrams per deciliter. Correct by one standard insulin unit for every 10 points over target range. Over 240 milligrams per deciliter, check for signs of diabetic ketoacidosis by peeing on a little white stick and comparing the shade to the side of a bottle—green or red or brown.

Abjection, a university word meaning, roughly, “not me.”

Not me when I’m 8 years old and being peered at by a room full of white-coated medical students because my case is so rare they’ll probably never see another like it. Not me when I’m 14 and crying because my new restricted-carb diet prevents me from having a second slice of pizza at my favorite restaurant. Not me when I’m 18 and missing my first weekend at college, holding my breath as a doctor inserts a two-foot-long biopsy needle into my liver. Not me at 24, lying naked on a metal gurney while a nurse washes away the blood and discharge from the gaping hole in my back and a hospital volunteer shaves my legs with a cheap disposable razor.

Not me at 28, checking into the ER with a heart attack that turns out to be a panic attack, yet another new addition to my long and strange medical history, brought on by the fact that I’m terrified of coming out to my Evangelical pastor father.

The one thing I always tell people I’ve learned from being sick is: you have to be your own advocate. The doctors and nurses and aides and social workers and registration clerks will speak with authority, and you’ll nod because they act like they’ve seen it all and wear white coats and use words you don’t understand. But you know your own body, and you know when something’s wrong, and you know when you’re not getting the care or the attention or the diagnosis you need.

So why am I lying here at 28, wincing in agony as the ER nurse fails in her second attempt to place an IV, as she digs and probes under my skin for a vein that a moment ago was so prominent, instead of simply telling her to stop?

On my 25th birthday nobody thought I’d go out to reward myself with a drink. I see the boy who did this to me all those months ago, his lips pressed to the pipe that pressed to my lips as he drove me down dark back roads and talked about his dreams of becoming assistant manager at the 24-hour McDonald’s.

“You almost killed me,” I tell him cheerfully, easily buzzed after my extended sobriety.

He’s drunker than me already, and heading back to the bar for more. “You show me yours, I’ll show you mine,” he replies.

We are talking about our scars.

I have three of note. One on my thigh, jagged and two inches long, from my first run-in with the medical establishment at the age of eight. The area around it has been numb ever since, the result of a hasty or botched exploratory tissue biopsy. My mom’s nurse friend will catch sight of it at the public pool once when I’m a few years older, the wound long healed and replaced by ghostly white lines.

“They did a terrible job on that,” she says. Aghast, she presses her finger against my scar without asking for permission. I pull away and dive back into the clear, chlorinated water like I’m diving away from her words. Not me.

The other two are from the staph. On my left arm, a two-inch pale pink indent dividing my deltoid and bicep muscles. It’s sort of badass, actually. That is a scar I will claim. The one on my back I can’t really describe because I never look at it, but every time I do catch a glimpse I’m surprised by how small it is. In my mind it’s a gaping crater, filled with the memory of lying shirtless and face-down in the guest bedroom at my mom’s house as she cleans my wound with saline and packs it with gauze every afternoon for months. Not me.

In between each wound cleaning and dressing are 24 long hours to be filled somehow, an even bigger chasm than the angry red thing on my back. I’m weak and restricted in my movements by the clear, skinny catheter carrying antibiotics from a lunchbox-sized pouch up through the vein of my right arm and directly into my heart. Theoretically while I lie here I could read or write or learn to knit, but practically I’m unable to focus on anything for longer than ten minutes before my energy is shot. My days are spent watching HGTV and dreading the moment my stepdad arrives home from work to find me lying on the couch in exactly the same spot as when he left.

As my physical health improves, my mental health spirals. I hate feeling so exposed at every dressing change, every follow-up appointment when a new medical resident examines my wound for signs of new infection. I take off my shirt and sit on the eggshell-white exam table, crinkling the crisp paper that covers it. I close my eyes as the bandages are removed. Not here. Not me.

I cry violently during three follow-ups in a row and my doctor gently suggests that I might benefit from talking to a therapist. I agree, desperate for anything that might help. The psychiatrist offices are in a part of the hospital I’ve never been to before, the rooms and corridors seem to have an unfriendly yellow tinge.

But the doctor is not what I expected. She’s pragmatic and no-nonsense. She doesn’t patronize me. She asks me about what has happened, what is happening, what I want to have happen in the future. She says I have good coping skills; I don’t know what exactly that means but it makes me feel good. I leave my first session feeling like a weight is lifting.

During my next visit she introduces her resident, who she says will be taking over my visits: the reality of a teaching hospital. I feel tricked and abandoned by the doctor and only loathing for the resident, who talks to me the way I would talk to a five-year-old.

“What’s something you’re looking forward to?” she asks, leaning across the table earnestly.

I want to say, thirty minutes from now when I don’t have to talk to you anymore. Instead I tell her about the holidays with my family.

She checks my chart and sees that I’ve put on weight in the months since my release from the hospital.

“Lots of good food at mom’s house?” she asks rhetorically. I almost gag at the condescension, too closed off from her to even explain that the weight on my chart represents an emaciated husk of a person, starved by the infection and the feeding tubes and daily fasting for tests. Or to tell her that the steroids I’m taking for my chronic liver condition are notorious for causing increased appetite and water retention. She could see it for herself if she bothered to actually read my chart, if she wasn’t just looking for the numbers to confirm what she’d already decided about my mental health.

She asks when I’ll be in for my next appointment. I tell her I need to check my schedule but I’ll call the office to set something up. I never call.

I do a lot of things I don’t want to. Going to the grocery store with my mom only reminds me of my lost independence, but I do it anyway because anything is better than sitting in the house staring at the television as each day flows seamlessly into the next in an endless flat line stretching as far as I can see.

“Do you want to go to the game?” asks my mom, removing a set of tickets from a manila envelope and sticking them to the refrigerator with a glittering Viva Las Vegas magnet. The women’s basketball team from the local university opens its season the following night, and she and my stepdad are longtime season ticket holders. “We don’t have to stay the whole time,” she adds, sensing my reluctance. I hadn’t played a sport since junior high and I’d never watched one for fun.

I think of the drive and the walk and the noise and the lights and the crowds of people staring at me with my tube-riddled body and shock-thinned hair. And then I think of another night cycling through the Food Network evening lineup before going to bed and hoping to fall asleep before I start to wish I were dead. The sleeping pills prescribed by the psychiatrist produce horrific, visceral nightmares, so every night I’m just left alone in the dark with my thoughts, however bleak they may be.

“Okay,” I say.

 

The crowds and the noise and the bright lights don’t bother me nearly as much as I thought they would. A few people give me second glances as I slowly and carefully make my way down the steps to our seats, antibiotic pack in tow. Several times I step to the side to let a quicker and more agile kid or teenager or grandfather walk past me. But I make it. I’m here.

And so are the girls, oh my god so are the girls. Their muscles flex as they dribble and pass, their ponytails swing behind them as they run the court, their sneakers squeak against the hardwood floor, their bodies crash into each other in ways both aggressive and exuberant. Watching them play isn’t about desire but about life, their endurance and skill and sheer energy standing in sharp contrast to my own weakened body. They demonstrate mastery of a sport at the highest level. I barely make it down the stairs.

I don’t feel anger or jealousy but instead a vicarious pleasure and empowered joy: Here is a space where women can not only exist but thrive, where girls can be loud and aggressive and sweaty and cocky and proud. Here is an arena filled with the roaring cheers and applause of thousands incited by a single gesture and two words from a woman. The star forward raises her arms, tilts back her head, and lets out her barbaric yawp. The crowd goes wild.

It’s all so beautiful that I could cry, but it’s also more excitement than I’ve had in months so I leave at halftime, exhausted but elated in a way I’d forgotten was possible. As my head hits the pillow I feel like every molecule of my body is buzzing with renewed energy, with possibilities and potential. The flat line of my existence curves ever-so-slightly upward, toward a faint bright spot somewhere in the distance.

As I go to more games I begin to understand the sport and get to know the players, their strengths and weaknesses and demeanors. In a turn of events somehow both improbable and inevitable, I become a fan. I read the pregame analyses and the box scores, listen to the post-game reports. I use the pronoun “we” differently, in the instinctive way that all sports fans do, to mean the team and the tradition and the set of values I have chosen to align myself with due to geography or chance, choice or family history.

“We won,” I say when really the team won, tricking myself into believing that my presence and my cheering and my lucky shirt are all crucial factors in the victory.

My sports-based superstitions are the closest thing I have to a religious ritual now. I don’t talk about wins or losses that haven’t happened yet, about the potential for injury or other catastrophe in the future. Anyone who does is more than likely to be met with a scolding, “Don’t jinx it!” (I play it for laughs but secretly mean it.)

 

In my dad’s church there’s a story about my time in the ICU, when I’d been taken off the sedatives but still lie unconscious, everything uncertain. On a Sunday morning as the congregation lifted me up in prayer, they say, I opened my eyes for the first time since arriving at the hospital three days earlier.

This God-based healing narrative ignites a small flame of anger in my chest every time I hear it. Okay, so God made me better. What about the doctors who drained and debrided my wounds, the nurses who drew my blood and placed my IVs and administered my antibiotics? My mom sleeping in a chair at the hospital for eighteen days and then acting as my home nurse for months afterwards, painstakingly sterilizing my PICC line and bathing me and changing my dressings and comforting me every time I burst into tears because it’s all too overwhelming? What about me, struggling every day to convince myself that life was still worth living, applying for job after job and rehearsing my explanation for the conspicuous gap on my resume, fighting to regain something resembling a full and independent life?

The visitation pastor comes over to my mom’s house one afternoon and tries to get me to tell him about the afterlife. “Those three days,” he says, trying to remain serious and clergy-like, but unable to hide the eagerness in his voice, “do you remember anything?”

I know the right answer: Bright lights, pearly gates, your time has not yet come my child, etc. But I’m tired and frustrated and not in the mood to lie.

“No,” I tell him. “Not a thing.”

He talks a little more about recovery and recuperation and God’s will and then, blessedly, leaves.

 

I don’t know if I believe in God but as I watch her on the arena screen—eyes squeezed shut and lips moving almost imperceptibly as a country-western singer belts out the national anthem—I  decide I might give him the benefit of the doubt.

This is all new, still. I wish I could pinpoint the moment when it became “her” instead of “them,” cite some first-sight trope or dramatic moment of epiphany. But my First Big Lesbian Crush happens gradually, coming into my peripheral vision and lingering there until I finally turn and look, in spite of all the personal, social, and cultural forces telling me to just keep staring straight ahead.

I can try to describe what makes her special. Off the court she’s soft-spoken and quietly charming; on it she’s larger than life and motherfucking beautiful. She’s tough, loud, determined, and hungry in every way. She’s a lightning bolt, a force of nature. Her arms and legs ripple with muscles. Wisps of brown hair trail down her neck, having freed themselves from the stretchy black pre-wrap she wears as a headband. She has a stubborn beer belly, in spite of the team’s rigorous regimen of workouts and practices and games. She is not afraid to take up space.

At first I think I want to be her. Then I realize I really just want to kiss her. And suddenly everything looks different.

 

My mom and I are on the road to the conference basketball tournament the first weekend in March when I tell her about my coffee date with a girl I met online.

“Does this mean you’re like… gay?” she asks.

“Um,” I say. “Yeah.”

“So when do I get to meet her?”

 

On that coffee date we talk about our families and our histories and our illnesses. She has thick black glasses and a loud, easy laugh that makes me feel like everything is going to be okay.

“Do you want to go get some food?” she asks, our coffees long gone.

“Sure,” I say instantly. I don’t care if I look too eager.

We go to a Wes Anderson movie and afterward buy a waffle-maker for her apartment. We sit on her bed for hours coloring, comparing our techniques. She presses firmly, creating vibrant shades and quickly wearing the crayons to stubs. My touch is much lighter, misty hues blending together in a dreamy effect.

“I like yours better,” I say. I’m smiling because this feels easy and right in a way that nothing else ever has.

We go to a play and in the dark she grabs my hand and intertwines our fingers. I try to focus on the action on the stage, but I’m too overwhelmed by the sudden, impossible realization that I’m cared for, that I’m wanted. Me.

Her fingers move and my heart pounds because I don’t want her to let go, it’s too soon, but she’s only adjusting her grip. Our palms have gotten sweaty from clasping so tightly but I don’t care one bit.

 

The first and only time I bring her back to my place we enter through the garage, past a huge pile of milk jugs filled with syringes that I’m too lazy to take to the recycling center. I don’t offer any explanation even though it would be a perfect opportunity to mention my diabetes. I left that part out of my medical history, near-death experiences obviously being far sexier than chronic illnesses, the drama of the Life Flight helicopter ride easily trumping the mundane, everyday reality of blood sugar checks and insulin injections.

I pinch the fat of my stomach into a roll and carefully insert the needle, slowly pushing in the plunger to ensure proper absorption. It’s supposed to take 10 seconds but sometimes when I’m impatient or distracted I empty the syringe all at once and then wince at the faint sting as the liquid enters the cells of my body. Sometimes I feel a small bump under my skin afterward, the result of overusing the same one-inch square site for injections. Sometimes there’s a tiny drop of blood, or a yellow-and-green bruise that I won’t notice until later, if at all.

“I hate needles” is always, always the first thing people say when they find out I’m diabetic.

To which I want to reply, great. How great for you that you have that option. Shockingly, I’m not a huge fan of them either. But since my pancreas is the biological equivalent of a used car with a sawdust-filled engine—great until you drive it off the lot—it’s either the needles or a Russian roulette of complications: Nerve damage, blindness, heart disease, Alzheimer’s, death.

In high school I had to go to the nurse’s office to give myself my shots, sequestered with the rest of the medicated kids including the handful of other diabetics. There was no community among us other than maybe a passing acknowledgment in the hallway, none of us wanting to be defined by our sickness. One of them was a twin, I remember, losing the genetic lottery to her identical sister.

Maybe it was the nurse’s office routine that has made me so hesitant about delivering my injections in public, contributing to the internalization of my disease as something shameful and private. Most of the time eating out means skipping a dose rather than dealing with the ordeal of setting my vials out on display, sterilizing them with square white alcohol pads, removing the bright orange cap from a syringe, and hiking up my shirt to expose a sliver of fatty flesh. Invariably, a server will approach the table at the exact moment when I’m piercing my skin with the needle. Sometimes they hesitate when they see me or awkwardly avert their eyes as I will myself to become invisible.

 

I tell myself I don’t need to come out because I’m a private person, because it’s nobody’s business anyway, and why do we even assume everyone’s straight by default? It’s not like I’m even seeing anyone seriously since coffee shop girl moved out of town, just a string of one-date wonders. My sexuality is almost completely theoretical when weighed against the very real, very public stance taken by my father against gay marriage, against the repercussions this knowledge would have for our relationship.

I have always been a private person, that’s true. But omitting certain facts in the course of casual conversation with my friends, with my coworkers, with my hair stylist, has never felt like lying before.

I think of myself lying completely bare on the shower table in the hospital burn unit, exposed skin and muscles and ligaments and bone. They give me a mild sedative called Versed to keep me calm and ease the pain. One of the possible side effects is memory loss, but somehow those cleanings are what I remember most vividly about my hospitalization. Everything is exposed under the bright fluorescent lights and all I want to do is fold up into myself, withdraw like a tortoise in its shell. To say there are some parts of me that still belong to only me.

My dad looks through my purse to get my phone for me and finds a pack of cigarettes, evidence of a dramatically delayed and watered-down teenage rebellion.

My mom calls my university to find out why they haven’t mailed my diploma yet and discovers I’ve dropped out, one thesis short of graduating with my Master’s and now $10,000 in student loan debt with nothing to show for it. My father still doesn’t know about that, either.

 

I’m driving with a friend across the state and we talk about how everyone we know is so much different than they were in college.

“I don’t feel like I’ve changed,” I say, watching the soft-edged Grant Wood fields unfurl before us. “Have I?”

She hesitates. “No and yes. You’re more responsible now. You’re like a real adult.”

I realize that’s probably the nicest way she can think of to tell me I’ve become a total bore, so I don’t press the issue. A trail of dust rises on a gravel road crossing the highway in the distance, the vehicle creating it still too small to make out.

 

“Are you really happy with your life?” asks a girl I’ve just met at a concert I traveled 300 miles to see. In the pit she was loud and laughing and rambunctious, but now she’s staring at me with a new intensity across the table at a Mexican restaurant lit mainly by Christmas lights strung across the wall behind the bar. I can feel my skin still buzzing from the music or maybe just from the fact that she has the prettiest eyes I’ve ever seen.

“Relatively.” I hold my breath, hoping she’ll confuse my reply for an actual answer.

“What does that mean?”

“Good question.” If I’d had one less drink I’d be able to avoid answering, laugh it off or slyly shift the question back to her. But instead everything spills out, my sickness infiltrating the narrative as always.

“I think it’s awesome that you came here alone,” she says later, for the third or fourth time, the story of my solo road trip apparently having left a bigger impression than anything else I’ve said.

“Yes,” I agree, “otherwise I wouldn’t have met you.”

She tells me about her first girlfriend, about being too close and feeling too much and hurting even now, still. I realize this is my reward for exposing myself, this spark of new intimacy the direct result of taking that risk.

I’ll show you mine if you show me yours.

We’re in her car and she gives me her number and we’re unapologetically singing along to the radio as the near-empty street rushes by. Everybody’s watching her but she’s looking at you, ooh ooh, you ooh ooh. The downtown lights glow white and orange and red and purple against a jet-black sky heavy with the promise of imminent rain. I roll my window down and close my eyes as the wind hits my face, still singing at the top of my lungs. The beat pounds in my ears and my heart pounds in my chest and a single cold raindrop hits my forehead and I’m alive, alive, alive.

 

Kelsey Landhuis is basically Peggy from Mad Men but gayer and (usually) funnier. She lives in Iowa, writes copy by day, and can be found on Twitter @landhuisen. Selected by Karolyn Gehrig.

Image copyright Agentpaint via Flickr Creative Commons.