By Sally Krueger-Wyman
Medical terminology: dysautonomia—an umbrella term referring to conditions involving the dysfunction of the autonomic nervous system, which controls everything your body does automatically (heart rate, blood pressure, digestion, temperature control, etc.); Ehlers Danlos Syndrome—a genetic connective tissue disorder. The experiences described include these and other comorbid conditions. Individual experiences with these conditions can vary greatly.
When my blood turns sluggish, and the pressure escapes, the inside of my brain is a foreign place. I turn inside and am not met with the state I expect—a place I control, a mind that is mine. It is overtaken by fire ants that dance upon my membranes—making thoughts race, then disappear. Making them dance with fire, then evaporate. The blood has left the brain.
Umm….Umm…Umm…I think I need…need….need…feet up. My parents get me to the recliner we’ve deemed medical equipment. I can barely see though nothing is blurry. My consciousness is a haze. I hear my body hit the chair—the sound of gravity and my full emotional and physical weight. My fingers grasp urgently at the chair’s round little lever—push it back with force. Legs go up; head goes down. Bubbles of feeling return to my brain, skating along the surface of my scalp—not enough. Mom reaches over me for the compression boots—big black vinyl things that zip over and encase my legs. I lift my right leg; she slips the first one under. My strength gives out. She pulls my foot into place, begins to zip up. I bristle. She adjusts and rezips. Fights to close the zipper over my thighs. The chorus repeats for the second leg. I wrestle the clunky plastic air hose into place. Our fingers tangle at the start button.
Bzzz…chreet…bzzz…chreet. The boots begin to push my blood into a healthier circulation. I breathe, shallowly and too fast.
Do you want the tv on? Can I do anything for you? Do you need a snack? An electrolyte? Cromolyn? Should I get the cold pack? Is it too hot in here? Midodrine? Do you have water? Are you alright?
My lips try to form words—get stuck. I mouth like a fish before I give up and give in. My chest caves, and I say, I am sorry I am sorry I am sorry or umm umm umm. One word—one phrase, that’s all I get. Thoughts swirl in a dance I would kill if I could. I am not the violent type. It is not me, whose thoughts whirl, kicking up dust that injures and blacks out my vision. Where am I? Who am I? Why am I this? Make it stop. How can it stop? Why is this me? Again and again, this is me. Or at least my body. My mind has clearly left the building.
I am shaking. My muscles contract with abandon. I cannot control them. Does this help? Is it bad? It is unavoidable. Or is there something I could have done? Did I bring this on myself? This cowering in my corner, in my chair, legs up, arms crossed tightly over a chest that’s shaking. Eyes closed, an ice pack wrapped around my head. Stuffing down electrolytes and salty popcorn like they’re a rope tossed over a precipice. Hoping desperately that the blood will return and my thoughts will stop dancing out my brain. My body rocks to the slight rhythm of hell. I silently beseech my mother for something she doesn’t know how to give, cannot. We give our silences all sorts of meanings. I look away.
I look back. Her hands circle futilely in front of me—frenetic evidence of her terror and her need to help. But we are helpless to ourselves and each other. We know this dance though we are none the more adept for it. The routine has carved itself past blood and is written on our bones. As much as I try to deviate, the body rips me back to route. She hovers over me until I say something fierce like the trapped dog I am, and she retreats. My chest feels hollow. My muscles are about to break from how tightly I am clenching my arms around myself. Caved in against the reality of human existence in an off kilter body. Shame coats over me.
Each time the blood flow returns, and I return, I do not understand myself and how that person was me. Yet it is. It is me in the extreme moments of being in my body. In the moments of oxygen starvation, of my body’s failure, I feel feral and inhuman. Yet what is this but the human experience?
As I write, words swirl around—escape into the fog of a brain with dysautonomia. One might argue a person who deals with brain fog to the point of frequently being unable to utter sentences more complex than umm…umm…umm (the grammarian in me acknowledges this to be a mere sentence fragment) might want to find a life’s purpose other than writing. I counter that words and the attempt to entrance the letter are my only hope of transcending yet honoring this malfunctioning body.
Words have surrounded me my whole life. I was born to a poet and a lawyer—taught the import of words: the beauty of their sound, the resonance of their meaning. I was born with a condition that has confounded countless doctors and turned my life experience into one of chronic illness and disability. Words have been my medicine—my way to make room for joy and victory within the realm of disability. I was ill often as a child; stories made me feel like myself. They allowed me to traverse the full spectrum of emotions and the world beyond the sick bed.
When I reached adulthood, my body refused to leave illness behind. As I yearned to break free from the confines of my body, John Donne’s words, discovered in a college textbook, eased me back into myself and the limitlessness of my nature: “Our creatures are our thoughts, creatures that are born giants.…Inexplicable mystery! I their creator am in a close prison, in a sick bed, anywhere, and any one of my creatures, my thoughts, is with the sun, and beyond the sun, overtakes the sun, and overgoes the sun in one pace, one step, and everywhere” (Meditation IV). Instinctively I knew these words held promise, held hope, held a future I could not only live with but thrive within.
And yet words are not always at my disposal nor are they always a source of comfort. Often, words escape me thanks to my body’s tendency towards extremely low cerebral blood flow velocity and leave me abandoned within a flailing brain and body. At these times I am confused, frustrated, scared. My body does all it can to correct the lack of forceful enough blood flow in my brain. Que the tears, the clenching muscle spasms, the desperate need to be recumbent. Attempting to avoid this state is exhaustion and insanity itself. The search for my body’s triggers is endless—an organizing notion of hope that I alternately cling to and repulse.
In 2015, when college with its endless viruses, extension requests, makeup assignments, and general exhaustion became too unbearable to my body and my spirit, I went on medical leave. I experienced depression. The life I’d envisioned for myself—the one I’d formulated while reading novel after novel with my feet up and my medically-prescribed compression gear on – seemed unavailable to someone in a body such as mine. I felt betrayed by my own hopes and dreams. For the first time, words failed me as a source of refuge. Novels filled with happy endings for those of able body were a bitter fantasy that sickened me as much as my actual illness. It was a betrayal that completely devastated me.
Words had turned against me. And yet I kept writing—I’ve never been able to keep the words at bay; they seep out with every small break in the brain fog. As a teen, words littered my desk on scraps of paper. Later, having admitted to myself that hand-writing and hypermobile Ehlers Danlos Syndrome don’t go “hand-in-hand,” they littered my desktop. The words kept coming. They were bitter; they were angry; they were utterly devoid of any hope for my future—yet they gave me one. They bled the poison, so to speak, and let me see myself and my power unconstrained by my body’s inability to play within the world’s standards.
So many rules—spoken and unspoken—do not bend to chronic illness. Disability: a destiny to break the rules. As Mary Oliver wrote, “You do not have to be good…. You only have to let the soft animal of your body / love what it loves. / Tell me about despair, yours, and I will tell you mine. / Meanwhile the world goes on” (Wild Geese). Our world loves to pretend that despair is temporary—that illness is unusual. That failure is just that—failure. It’s a singular hardship of a chronic illness. You are considered continually wrong because your body will not work right—hasn’t been fixed yet. You are a harsh reality people pretend not to see and rarely accommodate let alone applaud (unless, of course, you have been fixed! Did you try yoga?).
My entire life has been shaped by my body’s inability to work “correctly.” I have had to alter my life path in major ways so many times that I have quite honestly lost count. Beginning at age eight, I missed enough classes yearly to constitute expulsion had my grades been overly affected. A statement my school informed my family of with full knowledge of my health struggles and with no accompanying offer of aide. Midway through ninth-grade, years into countless doctor visits and medical tests, I switched to a more accommodating school before taking a year’s leave-of-absence between ninth and tenth grade. Discovering Stanford’s Online High School was a godsend. In college, at the University of Virginia, I experienced a culture of shame with a façade of assistance but a complete emphasis on the student’s responsibility to handle their health on their own. Accommodation discussions with professors were like a game of Russian roulette. Some a quiet relief—understanding, not caring one way or the other; others a reverberating shot of lead ripping through my psyche—We wouldn’t want your accommodations to be unfair to the other students. Not a one actually understood how to accommodate me and my ill body. Every absence, every missed class resulted in makeup work, so I had double the workload and twice the hardship. Another semester on medical leave and many extensions and excused absences later, I left college half-way through my degree before it literally destroyed me. My sense of self was shattered right along with my body.
All this, and yet I was unable to come to terms with the very fact that I am disabled until my mid-twenties, when I finally met other people with my medical condition, dysautonomia. The chronic illness experience is so little talked about—especially without a patina of shaming—that I was unable to acknowledge and have compassion for the struggle I faced living with my chronic illness until I saw my experience reflected in others. Literature offers a similar reflection and is vital to combating the isolation of the disabled and the divergent experience.
As with most writers, I am fascinated by the dissonances and the harmonies of the human experience and understand this best through the written word. My writing inevitably flows through the lens of disability awareness. Disability is an experience common to over forty million Americans, yet it is an experience that remains foreign to many—particularly those of my generation who are so far blessed with youth. As a person whose life is dictated by the demands of the body and as a director of a chronic illness community nonprofit, I am very aware of how many people do not have an inkling of what this experience is like. Likewise, I am aware of the many experiences of which I lack perception. So I read, and I write. In a divided world, literature transcends boundaries. Writing allows me a voice in the world—something particularly necessary when you are part of a community willfully overlooked and thrust away by society.
In the five years between withdrawing and returning to (a different) college, I examined the world around me through my keyboard and my camera—even when it narrowed to my bedroom—to see what this life had to offer. Photographer Robert Capa said, “If your pictures aren’t good enough, you’re not close enough.” Writing and photography share much: both benefit from close examination; both act as testimony. Disability is a harsh reality that people avoid acknowledging until they cannot. Writing holds the power to surpass willful ignorance and transmit truth directly to the soul. As Maya Angelou said, “the idea is to write it so that people hear it and it slides through the brain and goes straight to the heart.” The chronically ill and disabled communities deserve better from society. Words have a part to play. Poetry puts beauty in the pain and shows they are not mutually exclusive. I will never be without pain or illness entirely. My body is unlikely to receive that luxury. I will always have to fight my way through brain fog. Yet that does not mean that pain, hardship, and struggle cannot be mixed with pleasure, joy, and pride. There is room within disability for triumph.
I have felt stuck in my body—in its vast limitations—more times than I have felt free. Yet there is poetry in the rays of golden lamplight shining opaquely through the plastic of my Cromolyn medication vial. There is poetry in the love and excruciating devotion my parents have shown me through years of illness. There is poetry to my anger of being unseen and shoved aside by the world. There is poetry to my life—as constricted by my health as it may always be. Through writing, I lose the constriction of an ill body and become limitless. Through writing, I bathe the wounds of shame with the truth of testimony. Through writing, I offer my experience as a loving mirror to those born to a similar lot. Through writing, I ask the sun to see me and my kind. My words will find a way to surpass the sun even when I cannot.
Sally Krueger-Wyman (she/her) is a multi-genre writer whose essays and short stories appear in About Place Journal, Barzakh Magazine, Canyon Voices Magazine, and Lux Creative Review. She is co-writer of the nonprofit Earthshot’s graphic novel, Supercharged. Sally identifies as chronically ill and is co-executive director of the nonprofit Los Angeles Dysautonomia Network. She was recently named a Diversability Disability Impact Honoree of 2023. You can find her on social media @sallyv_kw or at www.sallykw.com.