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.

The Cultural Revolution

When I was 14, I read Pearl S Buck’s The Good Earth. It changed my life. I became obsessed with China, reading as much as I could about it. At one point in high school, I could boast that I owned all of the books that they sold in the Chinese history section at the local Barnes and Noble (about 2 dozen).  Not too long after I read The Good Earth I discovered Life and Death in Shanghai on my mom’s bookshelf. While I continued to read broadly about the history of China, this account of being imprisoned during the Cultural Revolution as a political dissident stuck with me and I gave special attention on the Cultural Revolution.

Throughout high school, I read about Chiang Kai-Shek and Mao Zedong, Madame Mao, the Gang of Four, the Red Guard and the “Let 100 Flowers Bloom” campaign. What happened to that obsession with China? I think my vision of devoting a scholarly life to Chinese history and/or politics was derailed when they didn’t offer Chinese at my high school; I had to settle for Japanese instead. Which I did and then went on to minor, almost major, in Japanese Studies in college and study abroad in Hirakata City, midway between Osaka and Kyoto. That dream slowly died as my interests in history shifted to religion, theology then ethics, and I discovered feminist theory during my junior year. 

Now, 25 years out of high school, my knowledge of Chinese history is shaky. But, the interest in it is still there. Every so often I read something about the Cultural Revolution that reminds me of how Sara, age 14 was fascinated with (and horrified by) dictators, oppressive regimes, anti-intellectualism, rebellion against tradition, secret police and corrupt governments. hmmm…maybe it’s not just reading about the cultural revolution that makes me think about this in 2017…

For the past couple of weeks, I’ve been reading Do Not Say We Have Nothing, a 2016 novel that was a finalist for the Man Booker Prize. So good!

Master storyteller Madeleine Thien takes us inside an extended family in China, showing us the lives of two successive generations—those who lived through Mao’s Cultural Revolution and their children, who became the students protesting in Tiananmen Square. At the center of this epic story are two young women, Marie and Ai-Ming. Through their relationship Marie strives to piece together the tale of her fractured family in present-day Vancouver, seeking answers in the fragile layers of their collective story. Her quest will unveil how Kai, her enigmatic father, a talented pianist, and Ai-Ming’s father, the shy and brilliant composer, Sparrow, along with the violin prodigy Zhuli were forced to reimagine their artistic and private selves during China’s political campaigns and how their fates reverberate through the years with lasting consequences.

W.W. Norton and Company

Storytelling is central to the book and to the survival of the families through the copying, retelling and distributing of The Book of Records. (For more on the power of storytelling and music, which also is central to the story, check out this review: What could resist the Red Guard? Music and Storytelling.)

I’d like to think more about storytelling and resistance in this book. So many interesting ideas about it. Like, the fact that the Book of Records is always only a copy of a story by an unknown author (a copy of a copy) and that every time it is copied (which is a lot), the story is slightly different. Or like how the copies are used to send secret messages; the copier adds details that only the intended receiver would recognize as clues, hints and/or directions.

Through the process of writing this post, I’m realizing that my interest in the Cultural Revolution and stories about China, is not really random or unusual compared to my other interests in ethics, storytelling, troublemaking and feminist and queer theory. The common thread: I’m drawn to stories/accounts of resistance, survival and impossible/unrealizable/tragic hope. So many of the accounts that I read about The Cultural Revolution were stories of resistance, providing me with possible answers to the questions: In the face of intolerable conditions, where hope seems lost and survival impossible, how do people manage to survive? What enables them to resist, to refuse to give in, to hold on to hope or at least the belief that they must persist, must keep on living?

I’d like to think some more about these ideas. They are an important part of my intellectual history and connect all my Saras, from Sara age 14 through Sara age 42. 

Bonus: While looking through my Safari Reading List, I discovered a link to an interactive story about the Cultural Revolution that I had added some time ago:

Voices from China’s Cultural Revolution

it’s 2017, time for a new story project

I’m still working on my intellectual history project, but I’m a bit stuck as I figure out what to do with it next and how to move forward with it in light of the super shitty post election U.S. While I think about that, I’m embarking on a new story project about running and training for a marathon. It’s called Run! (which is a reference to the women with a British accent on my Couch to 5k app in 2011 who would signal the start of each run segment by urgently declaring, “Run!”). Here’s what I wrote about it on my about page:

On October 1 2017, I will be running the Medtronic Twin Cities Marathon. My first marathon. I’ve been running since June of 2011 and finally feel ready to take on the distance. As part of a celebration and sustained focus on running, and to help keep me inspired and motivated over the long months of training, I’ve decided to embark on a new story project about running.

Inspired by Poverty Creek Journal, which I just finished reading, this story project is structured around a daily log of my training. As I briefly record some details of my run, I hope to add in reflections on running, reading, writing, thinking, feeling, engaging, surviving (post-2016) and being/becoming.

The project also includes my running stories and a resources page where I’m archiving books, movies, blogs, articles and more that shape my process (mentally, physically, emotionally) of training to run for four hours without stopping.

Site: Run! a story project about running

Shifting Questions

Since November of 2015, I’ve been working on a story project about my teaching life. By this October, I had finished two-thirds of it: 1. I am a Teacher!, about my past life as a formal professor, and 2. I was a Teacher., about recovering from my loss of passion for teaching and my exploration of new ways to be. I planned to write the third part, Am I still a teacher?, about imagining new ways to be a teacher, before the end of 2016. Then the election happened and I found myself struggling to write. Doubts about my project and whether or not it makes sense or has any value intensified as I was forced to confront what I already knew but was, before November 8th, able to ignore, or at least push aside: the system is fucked (and fucked up). I could say more about what I mean here and hopefully will soon, but if I try right now, I won’t ever get to the actual point of this post. 

This struggle has got me stuck and compelled me to wrestle with some new haunting questions. How do I respond to the fucked-up-ness of it all? What can I, as someone who has studied oppression, feminist movement and resistance for 20 years and has a Ph.D in troublemaking, offer to others? These questions are very difficult and without easy answers, but they are urgent and necessary and might help me to respond to and move beyond the question that prompted me to begin this project in the first place but that now seems too self-centered and unimportant.

Not, Am I still a Teacher? but How can I (best/most effectively) be a Teacher?

Today, in mid December, just days before the electoral college officially votes, I want to shift away from the question, am I a teacher?, to, how can I be a teacher in ways that enable me to use my skills to help others (and myself) to resist, refuse, reimagine and reclaim? One tentative answer: by crafting a resource guide (in syllabus form) for how to stay in trouble. I’ve already started collecting resources in Staying in Trouble: Post Election.