Beauty / Confessions / Death / Happy

On Living & Creating With An Auto-Immune Disorder (and Emily Dickinson)

I am writing this because it has been two years since I’ve been sick. I recently felt a little pain, and wanted to capture this time in my life.

—-

My mother nailed black curtains to the windows when I came to visit.

I stood in the middle of the room, no candles, no shadows. I imagined blindness. It wasn’t so horrific, I thought. It was freeing. I was in more pain than I had ever been, my entire face throbbing, my skull like a ripened fruit being cut in two halves.

The diagnosis was Uveitis, a chronic, recurring condition marked by the swelling and irritation of the uvea, which is the middle of the eye, responsible for supplying our retinas with blood.  It is the third leading cause of blindness in developed countries.

Try taking selfies when one of your eyes is all red. And this was on a "good day."

Try taking selfies when one of your eyes is all red. And this was on a “good day.”

The Uveitis was also sitting inside my eye with a cataract caused by the antidote (steroids). On top of that–an even rarer syndrome, Krukenberg’s Spindle, a pigmentary disorder within the eye. All of this was later said to be caused by an auto-immune disorder causing also arthritis, still hasn’t been treated due to my lack of health insurance. 

Crippling pain, severe light sensitivity, loss of vision, blood red eyes, dark shadows passing through the room, floating bits, flashes— it lost me a summer and an autumn and then some, and offered me the pure, dark quiet I needed to write.

—-

The sickness was at its ugliest during my MFA program in 2010-2011. It is key to note that I was utterly, horrifically depressed for other reasons–which probably exacerbated my sickness. I barely got through class, let alone thesis. I rarely socialized, because I was tired and my face hurt all the time.

There were times I wrote poetry in the dark–totally hyperbolic and inherently poetic! Sometimes I lit a candle, strategically positioned a chair away from the light (never look directly at the light) and wrote a few lines.

It was hard to hold my eyes open, impossible to see a way to ever complete my thoughts, and worse, I was unable to use beloved fonts on the computer. I don’t like writing on paper. I have never written on paper.

During these nights I realized how much of our lives is spent being distracted, pulled toward, fed, manipulated and tempted by the world. Much like King Minos attacking Athens from Crete, whenever I was bored something was destroyed; most often this was my psyche, my labyrinth, the endless somewhere-land where I exacted power over myself.

The Minotaur–my memories–was always waiting to pounce. I had more time to myself then I had ever had before, resulting in the resurfacing of memories I had repressed. It was beautiful and horrific.

Often I would stay awake, my head shrouded in a veil or scarf, waiting for sleep. I learned patience, learned to plead calmly with my thoughts. I had visions of yucca sitting on a plate in the center of a wooden table, receiving phone calls from my mother—she was somewhere far away, an old doll placed before me, the smell of formaldehyde, Satanic tree-houses in the NJ pine barrens, a tiger on a carousel. From the quiet, dark hours I received memories from myself in the form of images, all surfacing, as though someone had implanted someone else’s dream within me. They were my own.

One morning, when my eye would be more a rose than a rouge and the pain a little less immediate, I walked outside without shoes and watched the sky.

—-

Em-Dick.

Em-Dick.

Emily Dickinson said her eyes were “like the Sherry in the glass, that the Guest leaves,” (New England Quarterly).

Dickinson, too, who feared going blind, had what some scholars believe to be Uveitis. Between 1863-1865, her letters mysteriously change from ink to pencil. She writes, “Can you render my Pencil? the Physician has taken away my Pen.” She says, “He is not willing I should write, yet I work in my prison, and make guests for myself.”

She describes her experience as eight months of Siberia, (ain’t it the truth) without reading and without writing. She says, “I have been sick so long I do not know the sun.”

She called the light offensive and painful. Now, we all know Emily Dickinson is our favorite agoraphobic / anxious hot mess express, but could there have been a more psychosomatic influence on her body?

Psychiatrist John Cody thought so. Dickinson experienced loss: the loss of close friends, fear of the outside world. The New England Review wrote, “Organic or psychosomatic? The incontrovertible link between one’s mental state and iritis/uveitis cannot be dismissed, for psychological distress can impair immunity and precipitate disease.”

In the 1886 textbook, The Diagnostics and Treatment of Diseases of the Eye, someone (obviously pretty sexist) developed Hysterical Hyperaesthesia, occurring in young females suffering severe photophobia (an intense and debilitating sensitivity to light). Um, no.

Over time, women have been dubbed hysterical for many reasons, an entirely separate discussion—but there is some poetic lure to the idea that life, and the things we physically see or witness during it, may need to be regurgitated through the pores and holes in our bodies.

Dickinson may have been pushing her ailing heart through her head, capsizing anxiety through her retina. As writers, we need to learn to separate from the world around us in many ways—in order to process our surroundings, to get perspective, to watch, to evolve. Enough time alone, tucked away from stimulation and new information, forces one to make guests of their memories. It helps. And hurts.

—-

1987's Wings of Desire.

1987’s Wings of Desire.

In the 1987 film Wings of Desire, an angel wanders Berlin, constantly watching humans sweep in and out of the day, filled with fears and hurt, love and questioning. The city, post-apocolyptically beautiful, is home to thousands whose thoughts run the gamut of the human condition. This observation becomes lonely and tiresome to the angel.

The constant incoming transmission of the human heart starts to wear on him. He begins to yearn for human life, to be a part of the whole, and not merely an observer. For a long time, I felt like I had been transmitting SO much to myself that it became too much–too heavy. Just too much information. I wanted to actually join the human world, too, but for me, it was so that I could get away from my own transmissions. I missed being outdoors, no matter how much writing I could finish.

I am happy to say that in the past two years I’ve not been sick. I think it is truly because I am happier (in many ways) now. I don’t have a bad relationship and am not mourning and grieving. I am not placing blame; I am speculating.

However, I did feel a little pain this week. I do want to go to the doctor. I never want to lose my eyes. I never want to not see what I want to write about. Mortality and limitation is scary. But everyday that we are healthy and happy and able is a day that is seriously better than any other.

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4 thoughts on “On Living & Creating With An Auto-Immune Disorder (and Emily Dickinson)

  1. I was really moved by this entry Lisa. I happened to come across your blog via my love for Emily Dickinson and the beautiful movie Wings of Desire. I am so glad I did, and that you are recovering, too … I wish you strength for this coming New Year !

    • Oh hello Liza, thank you so much for reading it, and liking it. I love that you searched for Emily Dickinson and found this :) Please continue reading Luna Luna, and HAPPY NEW YEARS to you as well. xox

  2. WOWWW, Lisa, this piece is BEAUTIFUL. I’ve never heard of Uveitis before and I’m so glad I know about it now. That’s horrible that you experienced pain like that, I can’t imagine what that must have been like. That you were able to take such positive things out of such terrible pain is a real testament to who you are. I love the way you describe focusing so intently on memories. Memory is such a fascinating thing, and what we remember in loneliness or pain or the dark is really powerful. THANK YOU for writing about this!

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