Sometimes at night I Google symptoms on the internet. Tonight, the symptom is a swollen tongue.
Sore on both sides, mostly my left, so I’ve been flipping it back, pressing its tip on the roof of my mouth, upside down as if in a back bend, underside exposed, my tongue an arched spine and belly-up. It feels good this way, a needed stretch for the muscle’s usual position. If another human were here with me in my humid bedroom, I would wake that person up, they, who are surely asleep at this hour, and fling my tongue out of mouth as far it is goes to say ahhhhhhhh, and move it from side to side. “See the grooves there?” I’d point and say, as they move toward face with a finger. “Good god! Don’t touch it,” I’d protest. “Just look. See the zig-zag on that side? The puffed-up part? What do you think it is? Should I go to the doctor?”
But the fact of the matter is no one is here with me, in the night, when I need answers to these questions, when I need someone with me to look at my body and tell me what the hell it’s doing. That’s why I asked Google the question-mark-less question, “why is my tongue swollen on the sides,” waiting to find out that it’s just a sinus infection, or that I could have a fungus growing inside me now, beginning its manifestation in my mouth, which will soon spread to other soft and vulnerable parts of my body, or if I am simply, without a doubt, going to die soon because of something I cannot see.
I have been fascinated by death since I can remember. Not just death itself, but the image of an actual dying body in its decay. When I was about four years old, my mother brought me to the hospital with her to see her dying paternal grandfather, Papaw Queen, who apparently was not a good person, even long before he teased me as a toddler for “looking just like a little boy.” In the hospital, as this man I did not like was sinking into himself laid up in a mechanical bed, I only remember a few details—the florescent-lit room and that sick sour smell and his skin looking bluish gray and melting right off his bones. That image has never left me. I remember the day of his funeral, as our family gathered for food at his house after, when I pissed myself, piss dripping slowly under the frills of my dress, all down my white stockings and into my patent leather black slip-on shoes. My mother washed out my panties and stockings in the sink and told me it was okay and she sat me down on the floor in front of the spinning dryer. Waiting for my undergarments to dry, I imagine, even then, I enjoyed the strange, airy sensation of being without panties and wondering, of all the people I knew: who will die next and what will be The Thing that kills them?
It’s no wonder I thought so much about dying considering all the old people in my life as a child. It took me years to understand the difference between my many grandparents and great- grandparents because I called most of them either “Papaw something” or “Mamaw something” with the exception of my mother’s mother, “Nannie.” She didn’t seem old enough, not near death enough, to call her “Mamaw.” I’d pray at night, as my father taught me, a reliable script of a prayer, listing the great-grandparents and grandparents who were still alive at my birth:
“Now I lay me down to sleep, I pray thee lord my soul to keep, if I shall die before I wake, I pray thee Lord my soul to take. God bless Mommy and Daddy and Kristin (I always said my own name) and Kellie (but I never called her anything but Sissy in real life), Mamaw and Papaw Steele, Mamaw and Papaw Queen, Mamaw and Papaw Preston, and Nannie and Papaw. Dear Lord, thank you for all our past blessings. Watch over us throughout the night and day. Thank you for our food and everything.”
This came out in one fell swoop, rolling out of my mouth and off my Appalachian tongue in a whisper about every night until my late teens just before I left home. All those years, I guess it didn’t matter to me that, when I first memorized this prayer, Papaw Preston was already dead, nor did it matter that by the time I stopped reciting the prayer that only one of my grandparents was still alive. I figured if God was all powerful and could change the lives of the living, then surely he could bless people who were long since buried, too. Maybe that’s why, even after I felt the weight of guilt for many things, for the things I’d do to my body and the things it would do to me, I never quite remembered to ask for forgiveness. Surely, I thought, after I’m gone, someone will remember to pray for me, too. Just in case.
~
Nannie is my only grandparent left, eighty-three in October. She told me a few weeks ago on Mother’s Day that she’s “tired of not feeling good anymore.”
“Me, too, Nannie.”
“I know, honey. I know you know how it is.”
And I agreed that I do, in fact, know how it is, though thinking about it now, I’m not sure if we were talking about the not-good feelings in our bodies or in the one’s in our brains. Nannie and I both are nervous people—“nerve problems,” as my family likes to call anxiety or any other ailment of the organ in our heads that makes us see the world through worried eyes. Nannie and I both have scoliosis. Almost proudly, she says I got that from her. Sometimes when I visit she has me place my fist at this one spot in her back where the skin sinks in. “Feel that?” she asks, and I do—cold skin and a space where something’s missing.
“I have gaps like that, too,” I say, “the inside of my curve. See?” I lift my shirt up, my back facing her, and bend over. I feel my lanky arms and small breasts hanging down, gravity pulling them the floor as my grandmother places her hands on each side of my spine, feeling the bone on the left and the void on the right.
“Mmmmhmmm, I feel it. I hate that you have Nannie’s old crooked spine. It hurts me all the time.”
“Me, too, Nannie.”
“Could you get you another one of them back braces to wear? You think it’d make you feel better?”
“Sometimes I do think it would feel good to be strapped into one again, but they’re pretty expensive.”
I wore a plastic, Boston Jacket-style back brace 23 hours a day for about six years from the time I was 9 until I stopped growing around 15 or 16 years old. I was one of the earliest cases of idiopathic scoliosis my doctor had seen. At the time of my diagnosis, we didn’t have the internet. I could not ask Google:
Google could not tell me: “Relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.”
I could not spend hours, then, mining through an abyss of information to understand what it means to have this deformity or find other people online who share it by a simple search for a forum where strangers share intimate intricacies of their bodies with the hope that someone else’s body is troubled by symptoms, too. All I had then was Nannie and the other old people in my family who talked about ailments and pains and signs and symptoms full-stop, over dinner. Symptoms comfort. Symptoms are evidence. Symptoms are the sign of the existence of something—a thing that has name, that has a feeling, that has mass, even if it is a thing invisible.
In the era of my life I call The Back Brace Era, I’d lie awake at night from the pressure of the contraption, feeling pain inside and outside my body. Pain from the pushing of my “s” spine as straight as it would be willing to go. Pain from the pressure of plastic pushing on my hips and my growing breasts and my left rib cage through the Rib Window which hurt like fucking hell. I had a shell, like a turtle, walking around with free limbs but hard in the center, unable to arch my back, unable to bend side-to-side, unable to get up if you flipped me over the wrong way. God knows that if I had had a smart phone then, after being knocked down so many times, I’d have asked Google, “how do I get up” and probably taken a selfie, making fun of myself in some deadpan line, hoping that someone would laugh and like me.
Hebrews 11:1 tells us, “Now faith is the substance of things hoped for, the evidence of things not seen.” I remember hearing this Bible verse as a kid, often in the context of loss; loss of health, loss of a loved one, loss of hope. It comforts me no more. Why is faith that I—that we—will be okay so difficult to come by? Why is Every Little Thing evidence for something wrong, something off, something burrowed beneath the surface of the skin pushing its way out?
Even though doctors—real ones, with medical degrees—have diagnosed me with (and these are in chronological order of diagnosis date) an irregular heartbeat, idiopathic scoliosis, generalized anxiety disorder, panic disorder, major depression, insomnia, nickel contact dermatitis, TMJ, Raynaud’s disease, and seasonal allergies, I’m still convinced there must be more. I’m obsessed. I’d still pay good money to have an MRI and CT scan of my entire body so that I can see inside, but my doctors continue to tell me I don’t need them. I know they’re right. But when it gets late, when I look in the mirror and see a Little Thing amiss, I still look to Google for answers. I still believe strangers’ claims on message boards in the middle of the night, when doctors are asleep, those same hours I used to lie awake in my turtle shell during Back Brace Era, when I most needed to understand my pain, give it a name, call it a day, so I could finally go to sleep.
Pain, in a way, reassures me that I am real. Pain in the body validates the pain in my mind, the thought in my mind that doesn’t have mass, that I can’t have cut out and studied in a lab. I think I have learned to like it. We come together over pain. Pain can become ritual, like a funeral, we dread it, but we still come together and celebrate life and share our loss. We enjoy it, to a point, to the space where we want relief, but only by sharing it. And performing our lives on the internet offers us this without leaving the comfort of our home.
Scrolling through social media feeds is the new therapy session. WebMD is the new visit to your primary care physician. Message boards on mental health are the new CT-scan of our brains.
What is wrong with me, internet? We Google. Do I exist? We selfie. Do you understand me? We blog. Can you tell me what I am? Buzzfeed quiz. Can you make me into what I want to be? We Instagram. Please, we beg, look at me, internet, and show me what it is I cannot see in myself.
by Kristin Janae Steele
Kristin Janae Steele’s creative nonfiction most recently appeared in The Seventh Wave and Still: The Journal, where she was selected by Jason Howard as the 2014 Creative Nonfiction Contest Winner. A native of central Appalachia, she currently lives in Huntington, West Virginia and is a faculty member in the English Department at Marshall University where she teaches courses in creative writing, contemporary literature, and composition. She received her MFA in creative writing from The New School in New York City.
Author photo credit Most Exalted.
About the Artwork
The accompanying artwork is by contributor Stefan Hengst.
Appears In
Cagibi Issue 3
