It is hour 30 of a 48-hour ambulatory EEG. The sun has unveiled herself after a brief flash of rain, and the few birds that I can hear over Fordham Road’s late-afternoon cacophony of horns and sirens are madly chirping. Seated on my red velvet futon, surrounded by dejected pillows and unopened mail, I watch the sunlight pierce the maroon and turquoise curtains that cover the bay windows, and listen to the breeze as it rustles leaves beyond my line of sight. I’ve done little else, besides sleep, for the past 30 hours.
I’m wearing a skullcap of tightly wrapped gauze. Beneath the skullcap is a braid of brightly colored wires cemented to my head by an earnest technician. We were together long enough that I found I didn’t want to leave him behind when he finished. I wanted to know his history, his passions, the identity of the woman he spoke to in another language on his cell phone as he worked, but he dismissed me without a glance, so I had to make do and invent my own story for him.
This is my habit: to invent stories and personalities for complete strangers and inanimate objects. About a year ago, someone painted a frowning face on a sidewalk near my apartment. I named him Lester, and I feel guilty if I don’t whisper hello to him when I walk past. The past year has been hard on Lester; his outline has faded, his frown almost a memory. I wonder how I will feel when Lester finally disappears.
This ambulatory EEG isn’t anything to worry about—or so I tell myself in hour 30. I’ve lived with Ollier’s disease, which causes tumors that stunt and disfigure bones, my entire life. My left leg has been scarred by an orthopedic surgeon’s repeated work to straighten and lengthen the femur, tibia, and fibula. A skull-based brain tumor that caused seizures was partially removed, and my left eye paralyzed in the process; the remainder of the tumor was zapped with proton and photon radiation. Two of my fingers were amputated because the tumors grew to monstrous proportions. I’ve had just about every piece of bad news due to this disease that one can imagine. I’ve learned that the brain tumor has blocked messages between my uterus and pituitary gland (short read: no ovulation, no children), and could also be the reason behind my lapses in memory.
This EEG’s purpose is to check if I’m having an inordinate number of abnormal brain waves. Hopefully, the presence of just a few abnormal brain waves will convince my neurologist that I can continue to not take the anti-epileptic medicine I decided to stop using on my own two years ago. I stopped taking it because I felt it was unnecessary (I haven’t had a hint of a seizure since 2010), and because it’s one less thing to wait in line for each month. My neurologist listed the things I might not have noticed that would be controlled by medication. I didn’t listen—not because I distrusted her—but because my imagination can fill in the blanks.
And so I find myself waiting and alone on a beautiful summer day. This is also my habit, although it isn’t one I happily nurture like inventing stories for the living and nonliving in my life. I am excellent at waiting.
It has been my observation that if one is disabled, one becomes an expert at waiting. Like any muscle, waiting is honed after repeated use. I often witness examples of the waiting muscle in bodies that are missed by the abled eye. The waiting for elevators that are too full of abled passengers. The waiting behind the abled at crowded bus stops. The waiting in front of a broken subway elevator. The waiting outside an inaccessible building for one’s companions to emerge. The waiting at the only accessible entrance in an alleyway for someone to open the door. The waiting for abled passengers to exit the plane or train. The waiting for the abled driver to appear and move their car parked too closely to the disabled parking space.
Those who are waiting in any of those scenarios have a Buddha-like calm—not because they are calm, but because they know that they must remain calm for the abled eye that will note their frustration and possibly use it against them. It is perfectly acceptable for an abled person to rant about the inconvenience of a wait, but when a disabled person rants, rather than empathy, there is a general assumption of mental dysfunction in the rants, or, at the very least, the thought that the person is just an asshole. It’s difficult to be an asshole when one is a disabled person.
And then there is the unseen waiting. The waiting at clinics with indifferent staff. The waiting in hospital rooms with a roommate that screams through the night. The waiting at home to heal without hope of a perfect healing. The waiting for sleep that refuses to come. The waiting for those who forget to visit or call. The waiting for jobs that you don’t get for every reason other than the actual one: your disability that was on display during the interview. The waiting for an ambulatory EEG to end, which will either show nothing new or open another series of waiting rooms.
I’ve only let my rage show a handful of times. When I finished my most recent MRI, an MRI that took exceptionally long, I should add, the technician complimented me on my stillness. “Many people can’t stay still for that long,” she said.
I didn’t tell her I’d had a lifetime of practice. It didn’t occur to me to not be still.
Periodically throughout my childhood, my orthopedic surgeon decided to do reconstructive surgery in order to fight what my genetic code inscribed. Often these surgeries were in the summer. They included the breaking of bones and attaching metallic parts that could stretch and straighten said bones. And so, instead of going to camp or the public pool with other children, I spent summers waiting in one of two places: a large flowered armchair that my grandmother had reupholstered, surrounded by a pile of books and lit by a lamp that hung from a golden chain; or my bed, guarded by another stack of books and an easy-to-reach lamp. I also had a tape player by my bed, for the nights when the physical pain went unmuted by medication or the mental anguish of being eight, ten, eleven, or fourteen and unable to behave like an eight-, ten-, eleven-, or fourteen-year-old kept me awake. Books, music, and good lighting often help one through private waiting sessions. Another habit of mine that’s been carefully shaped over the years is this: to drown the pain of wanting another life by vicariously living others’ lives and lyrics. I suppose that’s what made me a writer.
I was introduced to Sara Louise Bradshaw and Rass Island when I was eleven or twelve. My mother had returned to college and was taking a young adult fiction class. She’d pass the books on to me after reading them herself, and I’d report my reaction to them. I felt important with this arrangement. I believed I was giving her an inside scoop into the mind of a real young adult. Katherine Paterson’s Jacob Have I Loved spoke to me like no other novel had. I’d never been to the Chesapeake Bay and didn’t have a twin, but I felt that Sara Louise’s story was my own because there comes a moment when Sara Louise realizes that she cannot remain on the island: “How could I face a lifetime of passive waiting? Waiting for the boats to come in of an afternoon, waiting in a crab house for the crabs to shed, waiting at home for children to be born, waiting for them to grow up, waiting, at last, for the Lord to take me home.”
Those lines have stayed with me because I knew from a very early age that I could not stay on my own Rass Island, which was a landlocked town of fewer than 3,000 people in Kansas. Like Sara Louise, I was Esau, the unloved son, whose “hill country” was turned “into a wasteland” by the violent Old Testament God. Sara Louise is the twin that is ignored and put aside at birth, while her sister is fussed over because she is fragile. From their birth and up until adulthood, Caroline is the center of attention, while Sara Louise is left “[c]lean and cold and motherless.” Sara Louise’s spiteful grandmother cites with glee the Bible verse, “Jacob have I loved, but Esau have I hated,” when Caroline is given an opportunity for education off the island but Sara Louise is not. When Sara Louise looks up the verse in the Bible, she sees the speaker is God. “God,” she realizes, “had chosen to hate me.”
I have only a few memories of times when community members brought up my disability to my face the way the grandmother had shown the world’s preference for Caroline over Sara Louise. My hometown is passive aggressive: generally polite, but they burn their neighbors behind closed doors, and cloak their derision in mundane acts.
But I have plenty of memories of being forced to wait or be left behind. The one of being left behind when my class walked and I limped with my uneven legs and orthopedic footwear to the track on the other side of town. The one of waiting on the sidelines for the class’ soccer games to end. The one of having to display my handicap whenever the PE teacher brought out the balance beam I couldn’t navigate or the rope I couldn’t climb.
I don’t remember being annoyed when these moments occurred; instead, I remember feeling ashamed that these moments arose at all. I had the distinct impression that had I been a stronger, better person, I could’ve walked just as quickly as my classmates, could’ve run and kicked the soccer ball, could’ve nimbly balanced my way across the beam and climbed the rope with ease. I knew that my disability was a form of laziness in my hometown’s eyes—and my own.
When one is disabled, telling the truth is immediately suspect. I fell off the jungle gym in the fourth grade, and knew immediately I had broken my leg (since I’d broken the same leg before), but the teacher on duty didn’t believe my wails of pain. She began to carry me back to the classroom, but stopped halfway there and demanded that I “take some steps on my own.” She wanted to prove to me that I hadn’t broken my leg. I didn’t want to disobey her, so I complied—and screamed in honest agony. I was confined to a partial body cast because of that break (it was a broken upper femur; if the teacher ever apologized for her behavior that day, it’s lost to memory). For six weeks, I lay on my back, suffering bedpans and basin baths. The elementary school principal didn’t want to have to pay for a teacher to come to my home during this time. My parents had to prove that it wasn’t possible for a fourth grader in a body cast to navigate the halls flat on her back in a wheelchair.
I was initially disappointed with the end of Jacob Have I Loved. Sara Louise does not leave Rass for an exciting locale or life; she doesn’t become a doctor, which is her ambition. Instead, the novel ends with her being a married midwife in a small community in Virginia, and her twin sister an accomplished singer in New York City. It seemed unfair that her sister would end up with all she dreamed of, but Sara Louise settled for a less applauded career in a place not much different from Rass.
Despite overwhelming evidence to the contrary, I still believed as a child and teenager that the world was my oyster, so I couldn’t quite forgive Sara Louise. She had two unfettered legs and perfect arms, yet she still ended up choosing a life of waiting, rather than having the waiting forced upon her. I was judging Sara Louise the same way I was judged by my hometown: I believed that had she been tough enough, smart enough, creative enough, she would’ve been able to get her dream. It wouldn’t have mattered that she was a woman in post-World War II America, where the white men who returned from war wanted their privileges back. I, too, believed in the mythology perpetuated by the white, abled, cis-gendered, heterosexual world: that if you are truly a good person, you will succeed and have power. I, too, was frightened by the reality: that there are those who are born into luck for no other reason than their particular mass of cells grants access to privilege; that if someone is born with a deformity, an illness, a gender, a skin color, a dress size, or a sexuality that is not considered “normal” by the wider population, it is likely a reflection on their very souls.
EEG AMBULATORY — 48 HOURS —Details
This is an abnormal study due to the presence of:
1) Rare spikes, left temporal region
2) Breach rhythm, left temporal region
This is an abnormal study.
The above mentioned findings indicate the presence of potential epileptogenesis arising from the left temporal region.
In addition, the breach rhythm is consistent with this patient’s prior craniotomy procedure.
— Judith Bluvstein, MD
I have another EEG, this time a brief one, with the same technician who obviously doesn’t remember me. At first, I am mildly offended. After all, one of my hallmarks is to be memorable. I have Ollier’s, a rare syndrome that only affects one in one hundred thousand. I have an eye that is permanently closed. Two fingers are gone. Although he wouldn’t have seen my legs, since I never exposed them to him, they are very distinctive. After all, I remember him. I remember how he’d spoken on the phone a year before in another language to a woman who seems (at least by sound) to be demanding things from him—although it might just be the inflection to my unaccustomed ears.
So now I listen to the technician’s words and the words of the woman he spoke to (wife? sister? mother?), and I’m suddenly aware that I am just another brain to him. This man who, as I learn this time around, is from Bangladesh, and whose English takes me a few careful listening moments to get used to. My syndrome, my disabledness, is nothing new to him, since he’s surrounded on a daily basis by people who have issues that are unique to them. I wonder about this as I exit the office on 38th Street. How is it that we, this giant group of disabled people, all have been brainwashed to believe we are uncommon, odd, outsiders. That we are to be segregated, stared at, shuffled away.
I carry this with me to the appointment with my neurologist on 34th Street to discuss the results of the latest EEG. The EEG in 2017 had convinced her that continuing to not take the anti-seizure medicine was okay, but she wanted to have yearly proof that my brain waves, while abnormal, weren’t too abnormal.
My new thoughts, barely formulated in my brain, are shocked into reality as I sit in the waiting room of the neurology department. A young man, possibly in his teens or early twenties, enters the waiting room and is screeching at every interaction. I glance his way, but force my head to turn back. His mother (or female caregiver) goes with him into the restroom; the entire waiting room hears her as she coaxes him onto the toilet, to wipe himself, and pull up his pants. His screeches begin to make sense to me. He is not afraid. He is not in pain. He is merely communicating with the world. Like the EEG technician, he speaks the language he is comfortable with. He is no more unique to the world than anyone else. But the world tells him, me, everyone, something different.
Then I am called. I go to the examination room, am weighed, and my blood pressure and pulse are recorded. The young man enters the web of tiny hallways and examination rooms. I hear his language, wish for a Rosetta Stone to decipher his tongue, wait for a flash of understanding, then the door closes; I hear no more.
EEG AWAKE OR DROWSY ROUTINE — Details
This is an abnormal EEG study recorded in the awake and drowsy states due to the presence of: left temporal slowing, breach and epileptiform discharges.
The findings described above are consistent with: focal cerebral dysfunction and prior brain surgery in the left temporal region. Findings are suggestive of focal (partial) epilepsy with a left temporal focus.
— Manisha G. Holmes, MD
Since that day I’ve returned to contemplating my disabled waiting life.
Not by choice. At the end of June, two tumors and a part of my fibula were removed from my right leg. My orthopedic oncologist was concerned about their rapid growth. The biopsies of the tumors were considered “worrisome” with “low cancer.” Four days later, my husband, Tom, and I came home. I have spent the month sitting on my red velvet futon, once again surrounded by pillows, unopened mail, and glasses of water that sweat in tune to the baleful heat that is July in New York.
Twenty-one days after the surgery, I wandered out into our neighborhood alone for the first time, and walked up Fordham Road for several blocks and back again with a single crutch. I’ve lengthened the walk an extra few blocks in the past few days. I noted on my last journey that Lester has almost entirely faded from view. I almost whispered “hello” to his ghost, but didn’t because a brisk-paced man stepped on top of what was left of Lester as I gathered air for the greeting. I still feel guilty for not speaking to him. My right leg is returning to its old annoying habits: cramped toes that shout “I’m stressed!” which is due (through my attempts at mindfulness) to tight muscles in my thigh and calf. I’ve yet to control the tightness permanently. My right leg and my brain are fighting the space that used to be filled by the top half of my fibula with phantom pain. When I walk, the muscle and brain insist that something should be there, and let me know, rather angrily.
My world for the month of July has been largely this room with the bay windows. I’ve spent hours watching television, looking at the computer screen, listening to music, staring at the walls and curtains that veil me from Hoffman Street. I’ve found I haven’t much patience for reading this time around, except for rereading well-thumbed novels from my childhood summers of waiting: The Blue Sword and The Hero and the Crown by Robin McKinley, The Chosen and My Name is Asher Lev by Chaim Potok, and Jacob Have I Loved. I’ve been thinking about my waiting life—examining it like a long-used dish, so old and familiar, you have to pause for a moment to remember how it came to be in your possession.
At the end of Jacob Have I Loved, Sara Louise delivers a pair of twins, one of which is breach and barely breathing. There is no incubator available, so she places the twin in a roasting pot and opens the oven. Then she waits for the infant’s body to warm. She waits with the patience she learned in her childhood while helping her father harvest oysters with a long pair of tongs, or waiting in a shed for the crabs to molt one last time. Hours later, she realizes she’d forgotten about the other twin like she was forgotten at birth, and tells the father to give that twin to her—to ensure that twin immediately knows love and care.
Like Sara Louise, I need to value my waiting muscle. Listen to it. Learn from it.
Last August, Tom and I decided to witness the total eclipse that crossed North America. My hometown is only three hours’ drive from the totality, so we came to Kansas, spent time with my parents, and on August 21, we all got up early to drive into Nebraska. We wandered for a quarter of an hour through one of the tiny towns soon to be enveloped in darkness, which for the first time in possibly decades, was overfilled with people. We eventually found space next to a cornfield outside of town that whispered indecipherable messages in the wind. For a while we were afraid that we weren’t going to see it; thatches of heavy clouds continually rolled between us and the sun, but just as we discussed moving to another location, they broke apart and dispersed. The yet unseen moon moved, ever so slowly, towards the sun. I took out my pair of eclipse glasses which Tom had ordered months before, leaned back in one of the creaky lawn chairs we’d brought, and waited.
What my memory retains from that day were the sounds of the totality. As the moon progressed in front of the sun, a hush swept over the cornfields and prairie and mile roads like a returning tide, lapping ever closer. A Kodak-hued twilight descended on the corn and grass and gravel that stretched around us; crickets began to chant their night songs, and birds settled amongst the hedgerows that lined the fields, cooing each other into rest. The rapidly cooling air tucked itself around us with an audible sigh. As the seconds of the totality began, echoes of screams emanated from every tiny encampment like our own. They were primal screams of wonderment. I stood and stared at the darkened orb, repeating “Oh my God,” over and over again. My father said with near-reverence: “Wow. Wow. Wow. Oh wow.”
As we waited for the flight back to New York the next day, Tom mentioned how I’d waited for the totality. He’d noted that while my mother was checking her email and flipping through magazines, and my father was listening to country music and checking his cell phone for what else was going on in the world, I sat apart with my face to the sun and waited with the rustling ears of corn. Tom decided to follow my lead.
The waiting muscle had come into use without my notice. My body knew this moment would pass much quicker than expected, and the chance of me being present for such an experience again was very small. My well-strengthened waiting muscle quietly, gracefully kicked in.
Originally published in Wordgathering, August 2018
Jessica Penner’s first novel, Shaken in the Water, was named an Editors’ Choice by the Historical Novel Society. Other work appears in Wordgathering, Bellevue Literary Review, Luna Luna, Necessary Fiction, The Fiddleback, Journal of Mennonite Writing, Rhubarb, Journal of Mennonite Studies, and the anthologies Tongue Screws and Testimonies and Gush. She teaches composition at New York City College of Technology. Links to some of her work can be found at http://www.jessicadawnpenner.com/ She lives in New York City—Crown Heights, Brooklyn—to be exact.
photography by Jessica Penner