By Emily Greenquist
Trigger warnings: illness, being woken up by an attacker, confined spaces, dementia, death.
Previously Published in Wordgathering: A Journal of Disability Poetry and Literature
Early July 2019
It started with a dull pain in my left side; I rolled out of bed with it, and it gnawed at me.
The pain existed where my waist dipped in, and then deep, further in, in somewhere previously
unknown to me. I assumed I slept on my side wrong, unconsciously contorting my body in such a
way that my age (39) was beginning to show or maybe we just needed a new mattress. The pain
grew over days and weeks. At the office, when I stood and spoke to colleagues, I found myself
squeezing my left hand to my left waist and slightly bending down, folding, a conversational
crumpling over. In the evenings and weekends, I lay on the couch for hours, buried under covers
and watching back episodes of RuPaul’s Drag Race, while I waited for this mystery side pain to
go away already. I dismissed the pain’s significance like I would a lingering cold; as the discomfort
intensified over time, I simply grumbled to my husband, Pete, and I napped about it.
As a College Student: Part 1
Pete Greenquist walked in late to mural painting class and I nearly fell out of my chair.
The MRI is loud and for long stretches of time, you must remain perfectly still, so that the
captured imaging is crisp. A noise beats, alien, rhythmic, penetrating, chirping. Then, when a body
is strapped into a coffin-like structure and being scanned, the sounds are like a high-pitched
mechanical needling. It sounds like the last moments of the song “Attic Room” by Casiotone for
the Painfully Alone; in which a person’s trapped existence is reduced to paperwork fed from an
unfeeling, jarringly loud, antiquated dot matrix printer.
Lying awake, stuck, I realized that the MRI was my overdue punishment for a lesson I
should have learned decades ago at my college senior art show. A friend selflessly modeled a
fabric sculpture I created, an embroidered muslin dress with paper-doll-like tabs that pinned her to the gallery wall. She recited written lines, asking visitors to approach her, so she could fix their
hair, tidy them up, mother them, while metaphorically stuck in a gender role and literally stuck
against a wall, unable to escape.
Soon after I declined her request to be taken down, she was in tears at the physical torture
she felt obligated to endure longer and longer, just until my dad finally arrived. Now, trapped in a
machine, I finally understood the agony I put her through for the sake of art and the acceptance of
an absent-minded parent.
My disease can hide.
Without the cane, no one would know I have a disability; without the bad leg and the
MRIs, I wouldn’t even know. My disease is me and we can hide.
We are mysterious.
I visited a Tarot Reader. Images of a snail appeared in the cards and from the Tarot Reader’s summary of the reading: “Snail’s body is symbolic of sensation, as they crawl on the earth. So, you are working on better connecting to what you feel, sense, and hear your body saying to you.” They gifted me with a card from their own deck – Interchangeability – illustrated as a snail. This souvenir remains as a pocket reminder to set a new, slower pace for my body, for my mind.
Inspired by the symbol of the snail and Pete’s romantic serenades, I re-watched Isabella Rossellini’s enchanting art video, Green Porno: Snail, where she costumes as a snail with “one big, slimy foot” coiled into her shell and sensuously writhes with her lover. In addition to slowing down, the snail also reminds me that I am a sexual being.
I may have a bum leg or a sore body, but none of my physical limitations should stop me from delighting in being intimate with my husband. I am not made uglier or less desirable by illness; I am simply changed and can adapt, sometimes with more pillows.
As a College Student: Part 2
Weeks before graduating with a BA in Studio Art, I woke up one school night to
an unknown hand clamped over my mouth.
Where is their other hand?
Suddenly aware and thrashing, I bit this hand mask, causing some awakening in them and
they let go. My face no longer pinned down, I sat up and stared as a shadow frantically ran out of
my bedroom door.
For years after, in the once sacred moments between awake and sleep, I saw a giant spider
floating above me, covering the ceiling, and staring down expectantly. Half in dreams I sometimes
followed this prickly shadow
out of the bedroom,
slowly walking beneath a muddle of limbs
as they crawled across the expanse of the ceiling,
leading with odd angles,
watching me and pointing the way
out of safety.
Steroids make me anxious and I took them in the mornings, as prescribed, as to not tamper with my sleep, but they tampered with my days, as I go-go-go from meeting to meeting and talk-talk-talk from meeting to meeting and carry all of my things from meeting to meeting to meeting to meeting. Medications, caffeine, sugar, over-prescribed anti-anxiety pills, any stimulant or stimulant-mimic, really, does its trick on me and when my speech speeds up, I explain to others that it’s the steroids for the inflammation and “I’m a delicate flower.”
People don’t understand change in others, even the occasional “off day;” they want consistency, full stop, or you’d better be ready to share your personal struggle in detail. Like years prior, in our final meeting, while I explained how happy I was now that I no longer needed daily anti-anxiety medication, the Psychiatrist interrupted me in mid-sentence, as they were concerned about my smile, which they had never seen before. They had only ever seen me numb or hyper-alert or sobbing or terrified. I had to explain that I simply have a crooked smile, which the Psychiatrist made me exercise on both sides of my face with a series of facial movements, fearing I had had a stroke.
To reassure the Psychiatrist, I then further explained that my parents weren’t around much when I was growing up and going to the dentist wasn’t a regular thing and as an adult I had to have 13 baby teeth removed before getting braces. Although corrected, my smile was already fixed into hiding my humiliating teeth and I was really, very happy now that I no longer needed the daily anti-anxiety medication.
My disease can heal.
My disease is forever with me, healing as it destroys. If I let it, it could shine a light on
memories that need tending to, so I could replenish, renew, recycle, sleep.
During a sisterly moment of reminiscing about our deceased father, I reminded my sister, Dorigen, of the eye-opening story of her having to solicit the help of a tech-savvy friend, a “hacker genius,” who helped her unlock dad’s inherited laptop by decrypting his password. We learned that dad’s password was some variant of the name “Jean,” his one wife, his lost love, the mother of his two girls. From this cracked code, we discovered that, for dad, the key was always mom.
In response to this retelling, Dorigen appeared baffled. She admitted she had no memory of this story or of ever having told it; she knew the laptop password, reminded me that I did too, and that this password had nothing to do with mom or her name. Us both perplexed, and after a back and forth of me retelling her story back to her with clear details and she respectfully denying all of it, I slowly realized this recollection, however true, was witnessed only by me and only in a lifelike dream that imprinted itself as a real memory.
My mom’s dementia has regressed her mind to a time in her life when I think she feels safest: toddler. Meanwhile, my Multiple Sclerosis has opened the mirrored door to an advancing time when I feel safest: adulthood. As I experience challenges, I feel protected when I responsibly seek to accept, reconcile, and heal. If I live to be an elder, a master of my mind and body, I wonder if my mom’s dementia is still waiting for me there, a coded Jean, an inherited memory distortion of a creative mind.
Will that future be only me in a dreamlike life, often corrected by others?
As A Wife
Pete and I relearned that kindness and creating time for collaboration, often in art and play, helped anchor us.
The Neurologist tried reaching me by phone multiple times, but I was too busy with work
to notice, so they started their written message to me with an apology for not finding another way
to deliver the news. I stayed late at work and was in between putting out the proverbial workplace
“fires” when I read the news that the recent set of MRIs, of the spine and brain, showed
abnormalities that would explain my symptoms and indicated a possible “demyelinating disease,”
a common one of which being “Multiple Sclerosis” (MS).
Exiting out of their message, I closed my laptop, helped the person who knocked at my
door, lied to a co-worker about the horror on my face, wrapped up work, waited with my cane on
a platform for the next unpacked train so I could sit down without displacing someone, and then
took the long commute home, swaying anonymously in the crowd and staring at my phone, which
shined the Neurologist’s sympathies.
They reasoned that the earlier, encouraging strength and flexibility tests had been likely
misled by the steroids, which suppressed my actual, failing abilities. They continued that the
Physical Therapist was due a deep “thank you” for the additional testing and shared details.
Multiple Sclerosis is not a disease with a direct diagnosis; I would need to undergo a series of
additional tests, continuing to determine what it isn’t, before I would be left with what may remain:
Multiple Sclerosis, background words associated with other people and places that I knew
Multiple Sclerosis, an illness, a failing, a supposed sadness; I should feel sadness.
Multiple Sclerosis, a repeated muttering for a series of ruling outs.
Multiple Sclerosis, a not yet.
My disease can help.
My disease can point out my mistakes and my costumes.
I have a Super Power
When I twist my back in a movement like a Claymation serpentine dancer, a feeling of
electricity radiates through my spine and arms. It is like a jarring shock wave from a live wire. It
is not like an orgasm. While this sensation was most prominent during a stretch of weeks shared
by an ever-present eye twitch, this electricity is still lightly humming within my spine, waiting for
its return to full glory. The Neurology Specialist who diagnosed the MS handed me a slip of paper
with the words: Barber Chair Phenomenon. It’s my assigned superpower, a near-dormant secret
that I have not yet figured out how to extend through and out of my fingertips to either heal or
destruct or tell.
As a Grown Up
Nestled in bed with my husband, I woke up with a mystery side pain one morning in early
July of 2019. Multiple Sclerosis was carving voids into my center, openings in which a disease
could tuck in and shine a light on secret memories,
reflected scars of an expectant past.
About the Author
Emily Greenquist’s recent writing appears in Syracuse University’s Wordgathering: A Journal of Disability Poetry and Literature and is forthcoming in Laughing Eye Weeping Eye’s Colorful Tears Tarot guidebook. She was the lead role in ROMERO, a video art project with poet Olivia Cronk. Her visual art collaborations with Pete Greenquist appear at local-businessmen.com.
2 thoughts on “Disease is a Mirror”
Phenominal artist. Emily draws clear pictures with words allowing us to share her journey. A true gift.
Thanks for sharing your story and pain. Just opening yourself up like you did takes courage. You’re a hard person to get to know Emily but reading your story helps me to know more about you. Thanks for that. Love Lynn