In August of 2016, at the age of 42, I was diagnosed with macular dystrophy. Two years later, the diagnosis was narrowed to cone dystrophy and I was told that I would lose all of my central vision within the next five years. Since then, I’ve been researching and writing about my vision loss. In the fall of 2018, I completed a series of poems about my experiences trying to keep swimming across my neighborhood lake as I struggled to see: How to Be When You Cannot See. In the spring of 2019, I did another series of poems that I fit into the form of Snellen Charts about my diagnosis and how I experience cone dystrophy: when i cannot see straight i will see sideways. My current project, Mood Rings, written this fall (2020), is a series of poems using the form of the blind spot in my central vision and the Amsler grid to express how it feels to be in-between seeing and being (legally) blind.
Finding My Blind Spot Which Isn’t a Spot but a Ring
Just before the pandemic hit, I started reading Georgina Kleege’s Sight Unseen. In the chapter, “The Mind’s Eye,” she describes how she finds the blind spot in her central vision by staring at a blank wall.
With effort, I can force myself to see my blind spot. When I stare directly at a blank wall, this flaw in my retina does not appear as a black hole or splotch of darkness. When I am very tired I see an irregularly shaped blotch, which throbs slightly and is either an intense blue-violet, or a deep teal green. More often, I see a blur slightly darker in color than the wall overlay with a pattern of tiny flecks. Depending on lighting conditions these flecks are bright white, sometimes edged in violet or a golden yellow.
This description inspired me to try and find my blind spot. I went to a blank wall in my living room, stood still, and stared at it. Eventually I saw something strange. It wasn’t a full spot but a dark ring with a light center. I tried drawing it from memory in my notebook. In August, I returned to the ring. I taped a piece of paper to the wall at eye level, closed one eye, and then traced the blind ring that appeared, first with a pencil, later with blue crayon.
I was amazed and delighted to see this ring. Finally evidence of declining vision that I could observe! I knew I was losing central vision by how much harder it was to read, how people’s faces were fuzzy blurs, how I never noticed mold, but my brain was compensating remarkably well and I often wondered if I was just making it up.
Before seeing my blind ring on the wall, the main method I used for checking up on my sight was to stare into the Amsler grid, which doctors use to detect damage to the macula. I would notice how the lines were wavy instead of straight, faded a few blocks from the center, not sharp, and I could reassure myself that I wasn’t making up my failing vision. But, seeing the ring on the wall, made the vision loss more dramatic and real.
Experimenting with Form
I decided to use these forms–my blind ring and the Amsler grid–for some poems about living in the in-between state of not quite seeing, not yet (legally) blind. And I decided to focus on how I felt and the moods I experienced in this state. It seemed urgent and important to try and identify and carefully study these moods and then find ways to express them, partly because I needed to work through my feelings, and partly because I wanted to give attention to something that wasn’t discussed enough: what it feels like to be in the process of losing sight/central vision. Not after it is lost or before, but during.
I had been thinking about what these poems might become for a while, but during a run on August 28th, it finally came to me: moods and mood rings! Here are some notes I recorded at the end of that run:
I experimented with different ways to use the ring on a block of justified text that was roughly the size of the Amsler grid. I drew it directly on the text, almost like an erasure poem in which you black out text to create a new poem. Next I tried making the letters that fell into the blind spot much lighter in font color so they almost disappeared. Then I traced the ring on a piece of paper, cut it out, and placed it over text, both on paper and on my computer screen. And I cut out another ring and the small circle of central vision I have left, taped them on to a sheet of paper, and then wrote the text of a poem on the ring and in the circle. I also tried turning the boxes of the Amsler grid into letters from the repeating phrases, “the site of my unseeing” and “uncanny valley.”
3 Poems in One Grid
Finally, when none of these methods quite worked, I decided to create a grid, 50 columns by 18 rows, and fit 3 poems describing a mood into it: a main poem that was in the form of my overall working vision, a smaller poem that was in the form of the central vision within the blind ring that I still have left, and a hidden poem with words filling in the boxes in the space of my blind ring.
Each box contains one character (a letter or space or punctuation) and I use a monotype font to keep it evenly spaced. The tedious process of trying to fit the poem in the boxes and to create a second inner poem with words that were also part of the first poem has been a helpful challenge that is enabling me to make my ideas and words for expressing them more precise and compelling and exciting (at least to me).