My sister says my apartment has ideal selfie lighting, and I look a lot more alive in this picture than I did a year ago.
I cried into a container of leftover stuffed pasta shells at my cubicle. It was a Monday, naturally. The kind of day that is both anticlimactic and life changing at once. I often expect major life changes to clamor in with a strange, upbeat tune like a jazz funeral.
But there I was, alone at my desk crying over bread, probably listening to “Invisible” by Clay Aiken. I’ve been gluten-free for a year, a bizarre statement that sounds trendy, almost, if it weren’t for the celiac disease that slowly sapped me of energy and frankly, body weight, for months before my diagnosis on March 28, 2016.
Today is much the same in its anticlimactic, life-changing dichotomy.
I clicked around on the computer this morning, tabbing back to Twitter a few too many times (follow me @TaylorOSoule). A few of those clicks led me to the University of Iowa student portal, where I paid my deposit and accepted my offer of admission in the College of Law. Continue reading
After four straight days of receiving medical bills in the mail, I got a letter and this adorable envelope from my friend Kevin in Taiwan. Thanks, Kev!
Small wins are the currency of 2016. The days my mailbox is empty of medical bills. The gluten-free pumpkin bar on the menu at the restaurant. The fading yellow of a lingering IV bruise. A perfect logic game. I find myself reflecting on 2016 and 23 as if the year is winding down, as if it’s time to neatly package my existence into a few profound lessons or moments, the kind I might look on in a year or when I’m 30 and say, “Well, that’s nice.”
This year is a lot messier, though, as itty-bitty moments of significance clutter my mind, surfacing unexpectedly. I often come back to the moment the doctor walked into my hospital room with two units of O+ blood, particularly as I prepare for my follow-up with the hematologist next week. In that moment, I faced the fragility of my fierce independence, trading it for the reality of a body that I felt had betrayed me. “I’m trying to get into law school, why do I have to worry about this shit?” I thought. Continue reading
I woke up in the ER in January in my hospital gown; I frantically asked, “Where are my clothes? Where are they?” I felt stripped.
I pulled bobby pins from my hair one by one March 24, piling them in my mother’s palm. I shielded the loose strands with my hands as I fled to the operating room for a biopsy of my stomach and small intestine. Fleeing sometimes takes on strange, disturbing dimensions.
This morning at the infusion room I tugged my sweater from my right arm slowly, the knitted fabric rippling reluctantly, clinging to my skin like it didn’t want to leave. The cold antiseptic stung. I hated my bare arm, resented it, looking away as the nurse stuck me, again.
In 2016, I’ve felt stripped of energy, clothing, control, my favorite foods (I love you and miss you, Pillsbury cinnamon rolls). I called my mom on her 50th birthday after the hematologist called me to inform me of the weekly IVs. It should have been a cheerful birthday call, the one where I inevitably say “happy birthday” in Arabic, tripping over the foreign sounds, still. Continue reading
This year is going so quickly.
I want to agree, to nod and smile, to say, “I can’t believe it’s already May!” I do say it sometimes, in fact, as if it were expected of me as a human, a millennial in a fast-paced world.
Yet time has slowed the past few months, escaping me even as I’m aware of its presence. I tell time by half-empty IV bags and doctor’s appointments and which “Lemonade” track is coming up next.
Unloveably boring, it is. I finally found the words to explain how I’ve been feeling. My life news is limited to the laughable LSAT answer choice I encountered on Thursday (“The fact that Roger wanted companionship does not by itself explain why he adopted 10 cats.”) and the religious experience of live-streaming new Beyoncé while under a unit of Benadryl. Continue reading
Bruises and bread embody my 2016 milestones; meanwhile, brides and babies pepper Twitter and Facebook. It is a juxtaposition of expectation, one I often battle. The tedious process of getting better has helped me focus on the incremental, little moments, the kind that don’t warrant life events or photo albums. Like cooking gluten-free chickpea pasta and not obsessing over the mess level in my kitchen.
Like wearing my new short-sleeved shirt despite the bruises on my right wrist. Their colors tell time, fading from red to purple to yellow, appointments and bills blurring into a macabre badge of honor. I look at my wrist. It reminds me that healing is ugly and unpredictable but in that colorful, “Wanna see my badass IV bruise?” way. Continue reading
Today we tried a new vein, and it worked on the first try! Big news, you guys.
Carb crying is my 2016 aesthetic. In March I built a makeshift fort of oatmeal boxes and biscuits and cereal; I cried sad tears over wheat, rye and barley while I listened to JoJo’s 2006 hit “Too Little Too Late.”
Last week I carb-cried again. I got teary eyed over a bowl of gluten-free fusilli at Noodles & Company — super glamorous. This time, though, I cried happy tears — like, “She got off the plane!” from “Friends” tears. The kind that inevitably slip to the table below right as the cute server arrives to inquire if there’s anything else you need, and with mouth full, you mumble-weep, “Nooooo.”
For the first time in six months, I felt well. Not “better” but “well.” The kind of “well” you say when you’re trying to be grammatically correct and impress someone rather than defaulting to the trusty, “Good, and you?” Continue reading
White petals flutter from the tree beyond my chair. It’s a breezy spring day, the kind that makes me a little overconfident in Iowa weather; I leave my jacket at home. Uncovered, bruises snake across my right forearm, browns and yellows and purples forming a winding web.
Here, the nurses transition effortlessly, alarmingly, between joking about veins and recapping an autopsy. It is an unsettling dichotomy, one that reminds me that getting better is a painful, messy process. Continue reading
There are rows of chairs, eight in mine, each a shiny, coated plastic, some pea green, others muted red. They’re trying to be easy chairs; that’s it. A source of relaxation, calm. They want to be watching TV; maybe a “Seinfeld” rerun or “Punk’d” with Ashton Kutcher. Yet they’re outfitted with trays and wheels and towels dangling from the back rack. They’re uneasy chairs.
Heat warms my right arm, the “good” arm, my IV arm — the nurse is forever trying to find the vein. “You’re a bit of a pincushion, aren’t you?” we joke, punctuating the sting of her inevitable third try at the IV. Continue reading