An Experiment for Class

I’m taking a wonderful poetry class based on Bernadette Mayer and the book, Please Add to this List. Here’s a experiment that I did for it:

Make a work out of continuously saying, in a column or list, one sentence or line, over & over in different ways, until you get it “right” (page 11).

Background: Last summer I was diagnosed with Best’s disease, a form of macular dystrophy. Objects that appear in my central vision often look fuzzy and out of focus. I’ve been trying to figure out ways to describe what and how I see. In January, I wrote about my vision in my running log.

I want to rework the following two parts of the log in a slight variation of the Please Add to this List experiment:

  1. A gray day. Warmish, but gloomy. Days like today make it hard for me to see. It’s not really dark outside, just overcast. But because of my macular dystrophy, overcast feels a lot darker. And it makes everything look fuzzy, like I’m seeing it through a slightly dirty piece of plastic.
  2. I wish I could articulate the sense of disconnection I feel when my sight is fuzzy. It’s as if I’m running in my own bubble.

A Gray Day, Eight Versions

version one: A gray day. Gloomy. Days like today make it difficult for me to see. It’s not really dark outside, just overcast, but because of my macular dystrophy, overcast feels a lot darker. And it makes everything look fuzzy, like I’m seeing it through a slightly dirty piece of plastic or running in my own bubble.

version two: An overcast day. Not dark, but gray and because I have macular dystrophy, gray seems a lot darker. It makes everything look fuzzy, like I’m seeing it through a slightly dirty piece of plastic. I feel like I’m running in my own bubble.

version three: An overcast day. Not dark, but gray. With my macular dystrophy, gray seems a lot darker. Makes everything look fuzzy, like I’m seeing it through a slightly opaque piece of plastic. I feel disconnceted from the path and other runners, like I’m running in my own bubble.

version four: A gray day. Not dark, just gray. But with my macular dystrophy, gray is dark. Everything looks fuzzy, not quite formed and not quite there, as if I’m looking through a slightly opaque piece of plastic. I feel separated from the path and other runners, like I’m running in my own bubble.

version five: A gray day. With my macular dystrophy, gray days make it difficult to see. Everything looks fuzzy, not quite formed and not quite there. And everything in my central vision—the trees, the path, the people running towards me—don’t quite seem real or part of my world. It’s as if I’m looking at them through a slightly opaque piece of plastic, like I’m running in a bubble.

version six: A gray day. WIth my macular dystrophy, gray days make it difficult to see. It all looks fuzzy, not quite formed and not quite there. The things that first appear in my central vision—the trees up ahead, the path, the people running towards me—don’t quite seem real or part of my world. It’s as if I’m looking at them through plastic, like I’m running in a bubble.

version seven: A gray day. With my macular dystrophy, gray days make everything look fuzzy, not quite formed and not quite there. Objects that first appear in my central vision—the trees, the path, the people running towards me—don’t seem real or part of my world. It’s as if I’m looking at them through a slightly opaque piece of plastic, like I’m running in a bubble.

version eight:
A gray day makes everything look fuzzy
not quite formed
not quite there.
The trees, the path, the people running towards me
aren’t real
aren’t really there, 
in my world
where I’m running in a bubble,
watching through slightly opaque plastic.

Who are you?*

*reference to The Who song unintentional but appreciated.

Before reflecting on the question in the title of this post, an update: As usual, I have too many projects going on at once. For me, the danger of doing creative work is that it’s too stimulating. Too many ideas. Too many possibilities. Too many things to read, to write, to wonder about.

My main project is run!. As I train for my first marathon in the fall of 2017, I’m writing about running, tracking and studying as many ways as possible that other runners tell stories/write about running and reading about the relationship between running and writing/creating and running as prayer. As part of this project, I’m also in the final week of an online poetry class in which I’m experimenting with different ways to write while running. I’ve recorded my self reflecting as I’m running and composing a poem while running up a steep hill. I’ve crafted a poem in question form, drawing from details in my running log. And I’ve created 3 erasure poems using 3 of my running log entries. Check the poetry out here: run.room34.com/my-running-stories

In addition to working on my run! project, I’m periodically revisiting my teaching portfolio and undisciplined dossier project. As I’ve moved on to other projects, I’ve lost my way a bit with this one. The question that motivated the project was, Am I a Teacher?, with the implied answer: yes, but…in ways that I still need to figure out and that are undisciplined and unconventional. Now, I’m not so sure. I feel more like a writer, a storyteller, an artist (of sorts). Where does that leave my project?

And, I’m redesigning my sites and experimenting with how to use my main site, undisciplined, to highlight my creative projects. Speaking of my main site, I’m working on a new version of the “about me” page that includes my various identities: Sara, undisciplined, ex-academic, storyteller and troublemaker. I’m calling it, “Who are you?,” which is a question partly inspired by Judith Butler and her book, Giving an Account of Oneself. Here’s what I’ve written so far:

Who are you?

I imagine this question as a demand to give an account, but also an invitation to experiment with crafting some answers.

Who do I think I am?*
What have I done?
What am I doing here?

*When I imagine these as demands, I often place a “just” at the beginning of each question.

Who are you?
An accusation and an opportunity
to leave a trace,
to bare some responsibility,
to weave a few stories.

Who am I? I am

Remembering Mom on her 75th Birthday

This story was originally published on my run! story project site.

march 5/5 MILES

59 degrees
mississippi river road path
15 mph wind

If my mom were alive, today would have been her 75th birthday. She died in 2009, from pancreatic cancer. She was a runner. Well, more like a jogger. She jogged regularly for decades, sometimes alone, sometimes with my dad. She was slow and steady and rarely ran in any races, just a few charity runs. She started in 1977, when I was 3 and she was 36.

I never talked to her about running, or if I did, I don’t remember any specifics from our conversations. Did she ever try to talk to me about it? Now that I’m an enthusiastic runner who loves to talk about running—where I run, who I encounter on my runs, how I feel on my runs, what parts of me hurt after my runs, what I listen to on my runs, what my times are on my runs—it’s hard for me to imagine her not wanting to talk about running and share her stories with me. Was I just not listening? Or, was she not as obsessed with running as I am?

Regardless of whether or not she talked with me about running, the fact that she ran was always there, a constant in my life as a kid, even as we moved from the North to the South and then to the Midwest. One of the ways I still picture the non-sick her–over 10 years after she got sick and 6 years since she died–is in her running clothes.

Random Running Memories of Mom, a list

  • She started running at the Paavo Nurmi Gym at Suomi College (now Finlandia University) in the 1970s. I remember tagging along (with my 2 older sisters) and sitting in the bleachers. I got my first kiss from Kiefer during on of her runs.
  • In the early 80s, she ran in rural North Carolina, after teaching all day at a junior high school. At least once, I tried to go out running with her. I couldn’t keep up, so she went ahead. Alone, on my way back home, I got trapped by a barking dog that was roaming the neighborhood.
  • In 5th grade, while biking recklessly on the road, I ran into a pick-up truck–I hit the truck; it didn’t hit me. My friend Sharla biked home and told my sister. She quickly got in the car and went looking for my mom, who was on her afternoon run. She rode with me in the ambulance, still wearing her running clothes.
  • My parents liked to go out running early on Saturday mornings. When they got back, they’d rush off again to go out for breakfast. I was rarely asked or allowed to go with them to the restaurant, which was fine with me because I hate breakfast food.
  • When we moved to West Des Moines, we joined a fancy health club: 7 Flags. My mom would run on the track while I used the rowing machine.
  • I went along with my parents only once on one of their runs. It was 1997, when I was 23 and they were both 56. It was on the recently redone waterfront in Houghton, Michigan. They ran; I walked. Their pace was slow enough that I could keep up while briskly walking.

Mom stopped running sometime in my 20s, years before her pancreas shut down and she had to have surgery and then chemo that only temporarily saved her life. It was also years before I started running. I never got to talk to her about how it felt to run for 20 minutes without stopping for the first time. Or experience her joy in witnessing the return of the physical Sara, the Sara that, in my late 20s, had been replaced with the intellectual Sara who thought too much and moved too little.

I wanted to take her on my run today. To imagine her beside me as I traveled on the bluff, above the Mississippi River. I couldn’t. My mind kept wandering back to the mechanics of my run–how was my heart rate? is my right knee doing okay? am I going too fast? But, that’s okay. I don’t need to imagine her beside me; she’s already always there. Not so much as a running partner, but as one of the reasons I run. I run because it’s something that I can share with her even though she’s dead. And I run because I know it would delight her and make her so proud that I’d found my way back to the physically confident Sara I had once been.

More quirky vision

In my ongoing efforts to document and communicate my experiences with a degenerative eye disease, I want to add to the list I started in my last blog post.

My Quirky Vision, a list continued

  • When I go to pick up my daughter from basketball practice, even when I’m wearing glasses, I can’t pick her out from across the gym.
  • Watching my daughter’s basketball games and my son’s swim meets is very difficult and exhausting. I can follow most of it, but it’s all a bit blurry.
  • In general, I avoid eye contact with people; I’m afraid that I should recognize them, but I won’t be able to. I feel awkward looking at them too long, trying to figure it out. Of course, this awkwardness is exacerbated by my introversion.
  • I also avoid eye contact because looking directly at people’s faces is difficult. They’re out of focus, which tires my brain as it tries to make sense of what I’m seeing.

Words like “fuzzy” or “blurry” or “out of focus” don’t seem to quite capture what my vision feels like to me. I should read some more accounts of other people’s vision problems. It might help me to express my own experiences more effectively.

My Quirky Vision

This weekend I came across a blog about running and low vision. The author/blogger has Stargardt’s, which is similar but a bit more extreme than Best’s, which is what I have. In 2012, as part of an effort to educate others on her experiences as legally blind, she tweeted about her blind moments or, her “brief, or sometimes not so brief, lapse, of sight,” using #blindmoments. She also wrote about it on her blog: Blind Moments

Her effort to document these moments has inspired me to try and document my own quirky vision moments*. I’m starting a list in this post. When I can figure out where I want to put it, I’ll turn it into a page.

*After reading through the below list, I’m not sure if these count as “moments.” Maybe quirky vision examples?

List! My Quirky Vision

  • I can still read out loud, but it takes a lot longer and I often trip over words.
  • Reading cursive ranges from difficult to nearly impossible.
  • I can hardly (if at all) see anything that has low contrast.
  • I can rarely catch a ball.
  • I don’t always see the cursor and can spend several frustrating (and frantic) minutes searching for it on the computer screen.
  • I usually severely under fill glasses because I can’t see the top of the liquid filling up in the glass. Or, I overfill and spill.
  • When I’m waiting at a stoplight, I sometimes lose sight of the light, even when I’m trying to keep focused on it.
  • Quite often, I can’t read the credits for a tv show, especially credits that move very fast.
  • I miss out on a lot of what is going on in tv shows because of how fast the action is happening.
  • I rarely get sight gags in tv shows (like “modern family”) because I don’t see them.
  • It takes a tremendous effort for me to read big letters, like the white ones in this image:

In fact, to read these letters, I had to cup my hands over the top of my eyes and very slowly read the words. It was very difficult.