Formless text for the poem/s:
Poem 1 = entire grid
Poem 2 = inner circle, central vision that’s left
Poem 3 = Blind Ring
So many years of odd symptoms dismissed as quirks or evidence of weak will. Finally proof of something else. After relief acceptance. I slow down settle into new habits search for better words to describe what I see switch to the pithiness of poetry and sparser pages. More room to imagine more space to breathe more rest for my eyes. I let go of the need to know instantly. To ever understand everything. I ask for help. Stop pretending to see things I do not. Learn to panic less. To accept continued confusion. To love softer fuzzier forms. To find some delight in mistaking a tree or a trashcan or a trail sign for a person. To look for more lights. Brighter bulbs.
space to breathe
yes. I let go
Instead of seeking second opinions I memorize the path. Mentally map the potholes the dips the cracks. Sink deep into sensations other than sight. Listen to the gorge. Hear the sumac creep under the fence and find its way through the asphalt.
Resources and Additional Thoughts
…the human perceptual system tends to be resilient, flexible, and adaptable.
Our brains have been adapting to new visual conditions since infancy. Each phase of physical, cognitive, and motor development necessitates the mastery of new visual and perceptual skills.Georgina Kleege
They had found that a surprising degree of adaptation occurred; somehow the visual system compensated, put things right, and allowed a person to function.The Vision Thing/ Denise Grady (1993)
As my vision declines and I lose more cone cells, my brain adapts. This doesn’t happen instantly. It can take a few days or weeks or months, which is exhausting, but one day I’ll realize it’s a little easier to make out the words in a book, or to recognize that tree on the corner, or to not spill as much water from my cup. This works until it doesn’t, as I lose some more cone cells. I’m not sure how it happens for other people with cone dystrophy, but for me, it isn’t a steady loss, with a few cones a day, but more like a burst of cones, then a long time of adjusting to the new loss. Much of this adjusting is done by my brain without me realizing it, some of it is through my conscious effort: developing new habits, finding new tricks, accepting what I can’t see and asking for help, learning to manage my effort (and be mindful of my spoons, which because of my brain’s constant attempt to make sense of the limited information it receives from my remaining cone cells, are not in endless supply).
Sink deeper into sensations other than sight.
That visual impairment improves hearing,ed book lee/ “Halos”
taste, smell, touch is mostly myth.
from dec 12 log entry: Visual impairment, in and of itself, has not improved my other senses. Instead, it has made me want to work harder on them: to learn to listen, to notice and make note of what I smell, to find words to describe the textures I encounter.
The eye doctor believes your central vision will be gone within five years. His recommendation: get your hearing checked. You must learn to listen.UN || DISCIPLINED: Learn to Listen
Tips and Tricks
- When you’re in the checkout line at Target with your husband, make sure to notice the lane number if you have to leave the line, because when you return you won’t recognize him, but you’ll recognize the number.
- Figure out how many seconds it takes to fill up your water bottle (or glass or mug) then count to that number as you refill it–even when you can’t see the water you won’t spill because when you reach the magic number you’ll know it’s filled.
- If you have identical containers for your sugar and flour, write in giant letters across each, “FLOUR” and “SUGAR” so you don’t accidentally put sugar in the flour, or flour in the sugar.
- When it gets too hard to see letters, read with your ears instead of your eyes; listen to audio books.
- To see someone’s face, look at their shoulder.
- Triple check that you have the right toothbrush (and not your daughter’s) before brushing your teeth. Consider moving yours or putting a rubber band around the bottom.
Ask for Help
- Always ask someone else to check if there is mold on the food before using/eating it, especially cheese and bread.
- Ask someone to explain what’s happening on a television show, especially one with lots of fast action, but only when you think it’s important. Otherwise, just learn to live with not knowing what’s happening.
- When someone wants to show you a meme or a picture, ask them to explain what you are looking at so you don’t panic when you can’t see it, or hurt your brain trying to figure it out.
- If possible, always go with someone else to a public bathroom in a new place. They can tell you which one is for women, which for men. In a better world, ALL bathrooms would be gender neutral so this wouldn’t be a problem–for you, or, more importantly, for a lot of other people.
the inspiration for the line, “To find some delight in mistaking a tree or a trashcan or a trail sign for a person”: “Mistook 2 trashcans for a group of people. Also thought a bright yellow jacket draped over one of the ancient boulders by the sprawling oak was a person. Good thing I didn’t greet them” (from my dec 7, 2019 log entry)
from a log entry on oct 24, 2020
Thinking more about my latest mood ring poem and what name to give it. Initially it was acceptance, then persistence. I mentioned resilience to Scott and he liked it. I’m thinking about the last line of the inner poem: ”Hear the water slowly seep through the limestone down to the river.” I see myself as the water, not the limestone. Not slowly being worn away until I no longer exist but continuing to find a way to the river, no matter what obstacle is in my way. This seems more like persistence than resilience but I’m not sure. I looked it up in the online OED and found this helpful definition:
5. The quality or fact of being able to recover quickly or easily from, or resist being affected by, a misfortune, shock, illness, etc.; robustness; adaptability.
The image of the water eroding the limestone doesn’t seem to fit here. I think it would be better if I used another gorge image: the vegetation that perpetually finds a way to poke through fence slats or bust through asphalt. Yes, I like this better.
I started running in June of 2011, first around lake nokomis and then, when we moved, above the Mississippi River Gorge. After my vision diagnosis in august and the terrible election in november of 2016, I began a running blog, where I wrote about running and the river. For four years now, I’ve payed attention to the river and the gorge and the running/walking trails beside it. Gradually, I’ve noticed many different things–the changing views, the different types of trees, trail surfaces. Last year, while working on a series of haibuns about my running route, I became fascinated with how the park system–Minneapolis Parks and the National Park System because the gorge is a national park–manages the trails–which trails they maintain, which they allow to decay/be reclaimed by the gorge. And fascinated by how difficult it is to manage because of how unmanageable the plants and vines and trees are, how stubborn they are in their refusals to be tamed, how quickly they take back trails and fields between mowings. There is a stretch, right at the southern entrance to the Winchell Trail, where old asphalt has reverted to mulch and dirt. Along that same trail, farther north, leaves from the trees below and vines on the bluff, wind through the fence slats onto the path, and push through the asphalt, causing the posts to pop the bolts that keep them in place. The idea of these vines, which are often sumac, refusing to be tamed or removed, seemed like a great metaphor for my own resilience–my refusal to be destroyed or overwhelmed or controlled by failing vision. So I made it the final line of the poem:
Hear the sumac creep under the fence and find its way though the asphalt.