A Year of Not Crying
In 2020 I left the Bronx. I returned to Florida during the beginning of the Covid-19 pandemic. The Bronx was chaos – still, lonely, and filled with sirens. There was no work. There were long lines at the grocery store.
I was sick for about six weeks. Everyone was afraid of me. A friend dropped soup on my stoop and waved through the window. I mostly slept. I called new hotlines and left messages: It feels like my right lung isn’t working. Nurses called me back: Don’t come in until the left one isn’t working either.
When I recovered, I came back to Florida, and I was still alone, but alone in swamp quiet instead of city quiet. Ambulance sirens were replaced by airboats engines after curfew on Orange Lake. I heard distant faint trains on 301, the incessant hum of frogs, sandhill cranes flying over my canoe in the mornings.
I started to have health problems. Perpetual static in my vision. Halos of beautiful colors around objects. Everyone looked saintly. Night driving in the country was close to impossible. Most doctors I saw dismissed my concerns, told me I had anxiety. A few proclaimed “MULTIPLE SCLEROSIS” and “BRAIN TUMOR.” I was sent for more tests. I remember one of the first neurologists I saw decided that there was nothing wrong, that I must be really scared from living in New York during the early months of the pandemic. An antidepressant should solve.
I would dress up for my appointments, business attire! The proper garments tucked! Work name badge casually attached to my purse like I forgot, any attempt to get doctors to believe me about symptoms they can't see on my body or in MRIs. I made every effort to never cry. Crying it seemed, about the news of my likely permanent visual impairment, only elicited conversations of SSRIs and stress management.
Over a year later, I was eventually diagnosed with visual snow syndrome, which is a very rare neurological condition that affects vision and hearing, with a constant repeated pattern of soft snow, halos, night blindness and tinnitus.
In this work, the repetition of these formal and perpetual appointments that seemingly led nowhere is shown in the repetition of symbols and futile gestures. (There is no cure for VSS, no well-established research initiative, no large population of patients to study.) The repeated image of the left eye became a sort of ritual, symbolizing how often I had to suppress crying. Body placement is positioned below objects of power, the pattern of the eye repeated and covering the body, noting that I am only viewed as the organ that appears normal to doctors. Caring and honoring gestures, almost worship, was made to my eyes and vision for having to dealt with medical disregard.
This performance speaks on the frustration and resilience that comes with being unheard in medical settings, especially as a woman. The repetition of the left eye and the rituals of tending to their repeated image are acts of defiance and self-care. These are gestures that honor the struggle of navigating a condition that is both rare and misunderstood. The repetition of only the left eye is also a nod to my father, who went blind in one eye years before his death. He also never truly received great help or care from doctors, mostly because he was poor. My father's experience with inadequate medical attention echoes in my current experience. In this work, I hope to touch on the broader issues of medical disregard and the emotional toll it takes. This art is not just about the condition itself, but about reclaiming agency and visibility in a world that often overlooks the unseen. May my father, and all of us, live in eternity with many left eyes and many tears, and still be believed.