I let the blinding fluorescents melt my eyeballs as I try and count how many dead flies have accumulated behind the plastic filter. I’m on nineteen. After examining the fliers on the wall that displayed the proper way to sit in the rolling chairs (some kid must’ve wiped out on the lime green tile) and desperately searching for something to entertain me, I realize that the children’s hospital is the most unpleasant place to be in the middle of the afternoon on a Wednesday.
Frankly, it’s the most unpleasant place to be at any time of the day, but there is an eerie tone to the whole “75 degrees beyond the window pane and a bunch of sick kids locked in cubicles” vibe. I know the waiting room all too well, partially because the warm stench of drooling children always makes my nausea flare-up. I really hate seeing children in masks and in casts made to fit their tiny limbs. Freaks me out.
I let the front desk lady ask me about my birthday and snap a picture of me with a small webcam that looks like it’s from 2004, peeling at the wristband they wrap around my sleeve. I remember the first time I showed up to the child’s neurologist two years ago and getting freaked out about the wristband. It made me feel like I really was sick. For two visits a year, I can’t cover up my illness with jokes or drug it into a state of submission. I have to face it.
I grab the medical forms and plop down on one of the seats facing the window, laughing at the questions like “are you hydrated?” and “rate your pain on a scale of 1-10”, my consistent pain level being a six which is accurately described as “miserably intolerable”. This scale is much more creative than others I’ve had to use which describes the levels as “hurts… hurts a lot.... hurts worse….”.
Putting pain on a spectrum has never been plausible for me. I always think of Hazel Grace in The Fault In Our Stars and how she saved her “nine” for when she really needed it. Although I sure hope that a boy I fall in love with doesn’t die horribly of cancer, I understand her mentality. I’m more lenient in giving out my nines because sometimes I really think that if the pain won’t kill me, then I will. That’s my criteria for a nine: wanting to bring a gun to your head to match the hellish fury of your nerves.
My name gets called and my mom and I walk back with the nurse, trailing down that dreaded hallway with the poor lighting and Clorox-ed vomit stench. We settle into a room that looks identical to every other room and take my vitals, which have been the same every single time. My weight is relatively stagnant unless I’ve had a bad episode recently, my height has been the same since middle school, and my blood pressure is fine.
Next comes the questions about water, food, and lifestyle. I try not to be too rude when the new nurse tries to ask me how many glasses of water I’m drinking as if this is the first time I’ve ever gotten a headache. I’m in a hospital for God’s sake… why is she asking me about water? Is she going to ask me if I’ve tried Ibuprofen, too?
Her face contorts, shoulders drop, and a full-body wince follows my apathetic, "no change," response to every single question. The whole event is drearily uneventful, and whoever thought to put fluorescent lights in a neurology clinic deserves a kick to the groin. I do my best to smile and patiently sit through the questions as she punches the “26 days out of an average month in pain” into the computer, her eyes almost glazing over in disbelief. The numbers are just ones I make up on the spot, trying to balance being realistic and lying just the right amount to make my life seem hopeful. I find myself doing these things a lot. Just saying what I know people want to hear so that I don’t have to listen any longer or think of some witty response. Most of the time, I’m in so much pain that I stutter and can’t hear anyway, so talking takes most of my energy.
The nurse gets up and leaves, closely followed by my hand flying up on the wall and flicking a bunch of switches until the lights flutter off. My mom and I start mimicking some of the questions and laughing, me making obscene hand gestures at every evaluation form about locating my pain. I typically circle the whole head on the human diagram.
I blow my nose with the single-ply tissue paper and wash my hands with the fancy doctor soap for fun, reading more signs displayed around the room. They’re always very wholesome with penguins or some other unproblematic animal telling you to turn your phone off or cover your mouth when you cough. After thirty minutes of waiting and analyzing everything posted on any square inch of the cubicle, my neurologist bustles in and drops his toolbag on the counter, hunching over the desk to look at my data.
He’s nice. I like my doctors. For the most part, they treat me like a human and want to actually help me. The business is the hidden side job they think I don’t know about, but recommending me drugs that are $40 a pop, completely disregarding an array of other options covered mostly by insurance, sometimes rubs me the wrong way. My neurologist is the most benign of them all. He’s not as cocky as my psychiatrist or as creepy as my chiropractor (I think being creepy is a part of the job description when you operate a practice that is pretty much a joke). He’s just a dad who sees me as a sick kid he’d like to help. He’s got those puppy dog, droopy eyes that water in pity when he drags my eyeballs around with a bright light.
After we get over the painful hump of small talk and college suggestions, the question comes. The dreaded inquiry I spend most of my time avoiding or diverting people’s attention from.
“So how have you been?”
I let my mom do the talking here. After all, she’s in “migraine hell” with me and is the one who stays vigilant about my medication intake and progress (or lack thereof). Most of the time, I’m just along for the ride. It’s the best I can do some days.
I used to keep track of every episode, symptom, medication, and any relief I felt, complete with weather patterns and possible stressors for the day. Then slowly, as I woke up every day and wrote the same things with the same pen about the same pain, I got so depressed I couldn’t even fathom waking up just to log my life away like it was some study. I gave up on it, accepted my condition, and tried to take life day by day. That has helped tremendously.
The next twenty minutes consist of new medication recommendations, multiple “I’m sorry this is still happening”s and hitting my joints with the soft hammer to make sure that for the most part, my body is still functional.
I start tearing up here. Whether it is reciting all the medications I’ve taken in the past few years, the suggestions of paying thousands of dollars to get paralyzing fluids injected into my head, or the final tests of my basic motor skills, it all piles up. My past seems to come running at me from behind and bulldoze me into the wall. My head flares, my eyes revert to their pinkish, dotty aura, and I am once again isolated in my pain. I rest my head on the back of the chair and gaze up at the fly-littered fluorescents that are now quietly dark, the small blobs of carcasses dormant in the hazel glow of the room.
My vision is most accurately described as doing some sort of exercise on the floor and then standing up far too quickly, small dots swimming everywhere. Instead of black dots, mine are usually a yellowish pink. I quite literally see the world through rose-colored glasses, only it doesn’t seem so pleasant. The flare feels sudden and sharp, probably triggered by the stress of the appointment. I do my best to imagine the dots as if they are the very particles that make up the air around me, making me a gifted seer of the world that no one else sees. These little lies that I tell myself are the reason I am still alive.
My neurologist leaves with a handshake and forced smile, and I practically run out the door, armed with new prescriptions and some fresh false hope, ready to face the world that brings me down every day. My appointments are just reminders that although I can get so close to being normal and healthy that I can almost taste it, it is an illusion I will never comprehend. That raises the question of what is “normality”, especially for teenagers who are discovering themselves. No matter what it is, this surely isn’t it. As most of my peers are having their first times in the backs of beat-up Subaru’s and living a carefree life with their friends, I am having to make decisions about medications that can possibly make me infertile or make my liver finally call it quits.
On the car ride home, I listen to the Beatles and try to bring my spirits up, still trying to push the rose haze away with frequent blinking. There is a piercing in my neck and a warm flame that is spreading like a wildfire on the right side of my skull. I surrender for the day.
I think about the appointment and all the grand gestures I could have made, maybe standing up on the wheeling chair and demanding better treatment. I think of how little will change until the next time I see him. I think of all the questions I have asked and will continue to ask so long as my pain persists. The thing about my pain persisting is this: so will I.
Cheyenne Mountain High School
Colorado Springs, CO 80906
Awards: Personal Essay & Memoir
Silver Medal, 2020