Split This Rock presents this essay, below, as part of our participation in Where My Dreaming and My Loving Live: Poetry & the Body, this year's programming of the national Poetry Coalition. To read more about this initiative, supported in part by a grant from the Ford Foundation, visit the website of the Academy of American Poets.
Jeanann Verlee will read at two events with Split This Rock in Washington, DC, March 17 and 18. Details at Split This Rock's website.
by Jeanann Verlee
Since April of 2015, I have been ill. Quietly. Secretly. My body turning against itself, devouring. Ravaging and shrinking me. I have not had the courage to talk about it. It was six months before I even confessed to my spouse that I was sick. Nine months before I consulted a doctor. Shame is thicker than blood.
Let me go back. I was already ill. I’ve been ill much of my life. Though my illnesses are often regarded differently. I was misdiagnosed with depression as a teen. I was diagnosed with bipolar disorder in my mid-twenties. In my late thirties, I was also diagnosed with PTSD and anxiety. I have bipolar disorder. Hypomania. Depression. PTSD. Chronic anxiety. I am, and have been, ill.
For more than three-quarters of my life, I have been on and off countless cocktails of medication in treatment of my illnesses. My medicines, manias, depressions, and bouts of anxiety do not prohibit a full and productive life, but are a daily consideration. Sometimes, hourly. I flinch. I shut down. I grow fangs. Each, with exacting efficiency.
Now this—my body seemingly turning itself inside-out—an apparently rare and incurable disease. One that is prohibitive of a full and productive life. Little is known about its progression, treatment is radically hit-and-miss, and its cause is unknown. Many doctors suspect this disease is caused by long-term use of SSRI’s (Selective Serotonin Reuptake Inhibitors, more commonly known as antidepressants). Oh, irony.
Still, there are other experts who have drawn links to long-term use of more benign drugs, such as Ibuprofen and other over-the-counter anti-inflammatories. Still others suggest genetic links. Many speculate that it may be an autoimmune disease, likely triggered by bacterial infection.
The answer is that there is no answer. Science doesn’t know the cause because science hasn’t studied it. More research needs to be done, they say. Very rare, they say. No one is researching because, like many systems in the U.S., this system is broken. Doctors are dismissing or best-guessing their way through diagnoses and treatments while my body consumes itself.
Many psychiatrists believe that autoimmune disorders are linked to psychological trauma. Most psychiatrists believe there is no distinction between body and mind. The line is not merely blurred—there is no line. My body-mind is testament to this. My body is not separate from my mind. I am conscious of both because I have a mind, but together, as one, my illnesses affect all of me. Through my writing, I have worked for years to dispel the stigma of “mental” illness, trying to underscore that illness is illness. That my illnesses are simple. Incurable. Treatable. Nothing to fear. Something to understand. Human.
And so, it is possible—even likely—that the traumas I have survived fractured my psyche which led to treatment with psychiatric medicine which led to my body devouring itself. Or—equally likely—traumas fractured my psyche AND led my body to devour itself, regardless of medicine. More research needs to be done, they say.
I am sick. Chronically. My whole body-mind. Every day. I cannot predict what each morning will bring, but I know it will be some assortment of varied levels of pain, nausea, numbness, swelling, cramping, discomfort, exhaustion—AND—fear, sadness, rage, anxiety, hypervigilance, and shame.
* * *
After almost three years, five doctors, four clinics, and countless lab technicians, I was only officially diagnosed five weeks ago. Initially I was dismissed. Then misdiagnosed. Repeatedly. I refused to accept their amorphous answers. I tried again. And again. Each new clinic, each new set of doctors and staff, I was humiliated and mistreated and shamed. Dejected, I would give up for a time, then start over, refusing to be dismissed. I had to take my health into my own hands because medical professionals had simply thrown their hands in the air (one doctor did so quite literally).
I had to bully my way through. To be heard. To be seen. It took stamina. It took energy I often didn’t have. I spent countless nights sobbing, begging my body to stop hurting. Some nights I wanted to die. Many nights I thought I might be dying. Our system is broken. I had to do the work myself. Alone. I had to take the notes, keep the records. I had to repeatedly subject myself to the same tests, to endure the same humiliations, as each technician or doctor simply ticked off the same go-to list, Just to be sure.
Meanwhile, my body continues eating itself. Meanwhile, I am smaller and smaller and smaller. I have lost one quarter of my body mass, and I was already a fairly small person. My gums are receding, my hair is loosening from the root, my menstrual cycle is erratic, my skin is…you get the idea. Rattling changes. But this disease is not terminal and just knowing that has brought indescribable relief. Still, treatment has not improved my condition at all. I’m in a daily battle with my body-mind to avoid the host of ailments that come of malnutrition.
Unrelated—but not unrelated—during the throes of all this, a different doctor found a lump. Yes. In my left breast. Simultaneously, a painful cyst developed on my left ovary. It burst. It returned. It continues to grow. These other issues derailed my progress with new tests, sonograms, biopsies, prodding and groping in effort to determine any diagnosis and treatment for—well, everything else. My brain caught fire. Am I dying? After all this surviving? After fighting to stay? Why everything all at once? For now, we wait. To see if the lump changes. If the cysts change. I am being monitored. Just wait and see. Just wait.
Further to it all, though I am among those lucky enough to have medical insurance, mine is woefully insufficient. My annual deductible is so high, I never actually see the financial benefit of medical coverage. I have to pay out-of-pocket for everything (visits, tests, procedures, prescriptions) until I meet the improbable deductible, at which point coverage would begin and I would pay the more reasonable costs of tiered co-pays.
However, I have never met that deductible. I pay out-of-pocket all year, and then suddenly it’s January and we start all over again. This out-of-pocket cost is in addition to the insurance fees deducted from my paycheck—in essence, I pay for the luxury of paying full-price for medical services. I am now in debt for medical expenses despite having medical insurance. Our system is broken.
It is through this demoralizing process that I have gained renewed respect for other individuals with chronic illnesses. While I’ve long imagined myself compassionate, I did not—could not—understand. I am beginning to understand. I have a long road ahead of me, but I have a road. I am here. I am sick. But I am here.
When Sarah Browning of Split This Rock queried if I had any ideas to share for the blog, I was at a loss. I don’t want to talk about any of this. I am not ready. I am not ready to write about this. I have not yet found a treatment that manages my pain and daily discomfort. I haven’t determined a reasonable method for financing medical costs. I have too much fear and there are too many unknowns to address the topic with any proficiency. But just last night, roused from sleep yet again, wrestling back tears in the desperate blur of 4 a.m., begging my body to stop hurting, I decided to give myself permission. To write—something, anything. This.
In the spirit of Split This Rock, I offer this prologue as introduction to some of the poems that have sustained me throughout this period—poems that yes, bear witness and provoke change. These poems address the numerous and complicated realities of the body-mind, from stigma to genetics to shame to resurrection to the immeasurable ways that we love—and are loved—through life, illness, survival, and loss. These writers are not only powerful artisans of language, but heroic livers of life. Writing with unflinching rigor and sight, challenging our many broken systems through voice and story. These are just some of the poems that have beckoned, shaped, healed, and held me—and I am immeasurably grateful.
· Litany with Blood All Over by Danez Smith
· Angel Nafis by Angel Nafis
· my eyes in the time of apparition by Rachel McKibbens
· Post-Diagnosis by sam sax
· Surgery Psalm by Liv Mammone
· Let Me Handle My Business, Damn by Morgan Parker
· As Around the Sun the Earth Knows She’s Revolving by Casey Rocheteau
· Cleave by Ian Khadan
· Someone Asked Me if My Hair Was Mine Today by Siaara Freeman
· Ode to Lithium #75: Mind over Matter by Shira Erlichman
Verlee has served as poetry editor for various publications, including Union Station Magazine and Winter Tangerine Review, in addition to a number of individual collections. The former director of Urbana Poetry Slam, where she served as writing and performance coach, Verlee performs and facilitates workshops at schools, theatres, libraries, bookstores, and dive bars across North America. She collects tattoos and kisses Rottweilers. She believes in you. Find her at jeanannverlee.com.