Why Best Disease is the best disease, one reason

Recently I was diagnosed with Best Disease, or vitelliform macular degeneration. Named after the doctor who first presented on it, Dr. Friedrich Best, it’s a very rare eye disease that affects your central vision. Very little is known about it and there’s no cure. It’s hereditary and dominant but its effects vary so widely, from hardly any impact on your vision to becoming legally blind, that most families are unaware that they are carrying it or that they have a 50% chance of passing it on to their kids.

For me, so far at age 42, the effects are manageable and minimal, but very inconsistent. Overall, I can still see fairly well. Before my diagnosis, I didn’t even wear glasses, except for when I’m driving. I will now. Bifocals, in fact. But, everything is always a little blurry. Sometimes I can see things very clearly. Other times, I can’t see things if they first appear in my central field of vision. I don’t mean that they’re too fuzzy or too hard to see. I mean, they just aren’t there. To me, they don’t exist. I have difficulty focusing on images or seeing things when there is too little contrast or not enough light. I fail colorblind tests. I can’t track the cursor on the computer screen. I have trouble making out the details in people’s faces. And I can still read, but it’s much harder to read out loud without hesitating over words.

Having Best disease kind of sucks, but not really. I’ve already been adjusting to limited vision for at least 20 years now, so it’s a big relief to finally know why bikers who I hadn’t seen even though I was very carefully looking would suddenly appear in my peripheral vision or why I would become so overwhelmed in the grocery store trying to find that one item on the shelf or why I freaked out when I had to try and read the menu board at a fast food place or why I would hate driving to new houses because I could never see the house numbers or street signs as quickly as I needed to or why images on a billboard just didn’t make sense as images or why I never seemed to be able to recognize the faces of people that I had encountered regularly, but might not talk to that often. I wasn’t losing my mind. I didn’t have some serious neurological problem. I just had a freaky eye thing, where the cones and rods in my central vision resemble scrambled eggs and everything looks just a little fuzzy.

Yes, Best disease is a big deal. Yes, there is no cure. Yes, it will most likely mean that one day I won’t be able to read without a magnifying glass or that I might not be able to see people’s faces because my central vision is reduced to a gray, blank, fuzziness or that I could trip and fall on the stairs because I can’t see the step. And it has already meant that I didn’t swim in my first ever open water swim race, the one that I signed up for way back in January and was very excited about doing but had to gut-wrenchingly drop out of at the last minute because there was too much fog and I wasn’t sure that I’d be able to see the buoys to stay on course, which were green and I probably wouldn’t have seen them even if was a perfectly clear day because Best in some ways mimics red-green deficiency so I have a lot of trouble seeing green.

But, Best disease isn’t that bad and it has it’s benefits. At least for me. So, I’m starting a list, one that I hope to add onto as I encounter new reasons, for why Best disease is the best disease.

Here’s a reason that I discovered last Friday when my daughter came home form school and told me that she couldn’t eat the sandwich I had made her because it had mold on it:

I don’t have to make my daughter’s lunch for school anymore!

Because of my quirky vision, I couldn’t see the mold on the bread. And I might not see it again. While she was impressively relaxed about it, moldy sandwiches will not work for my daughter, who is a self-proclaimed “germaphobe”. Since she knows that I can’t guarantee that I will see that mold, I’m off the hook! Free from the toil of making sandwiches day after day after day. Free from having to figure out if I’ve put the proper amount of peanut butter on it or correctly guessed the jelly du jour or if I should use the ham that we just bought because she had to have it or the turkey that she likes all the time, except for when she doesn’t. I can live with that.

Taking and Making a Break

(also known as Teaching Statement, Part 2)

Having finished a rough draft of section 1 (I Am a Teacher!) of a Troubling Teaching Portfolio, I’m moving onto section 2 (I Was a Teacher.). This section is about what I did after leaving the academy, from Jan 2012 thought the Fall/Winter 2015. It’s about how I took a break from teaching/being an academic in order to restore myself and to experiment/write/learn more and then made a break (ran away + split from) my Academic Self in order to reorient myself and reclaim my passion for thinking, learning, being.

Since I’m struggling a bit with this section and I want to get unstuck and finish it so that I can move onto the real fun of this project (and the initial reason that I’m began it), I’ve decided write about it in this post (and probably several more posts).

Section Inventory, some preliminary thoughts in (of course!) LIST form:

  • A timeline of major projects + excerpts from various projects? Should this include some narrative about what I was doing? What I learned?
  • A list of various tools that I experimented with and researched
  • Accounts of how I made trouble with social media
  • A list of “theoretical” concepts that have informed my ideas
  • Descriptions (+ list?) of ways I’ve worked to undiscipline myself

Here’s a timeline that I’ve created for 2012-2015

Timeline: This is me Taking a Break?*


  • Applied for one last job
  • Began working at Room 34, attending client meetings and learning code + finally understanding what my husband meant when he would tell me that he “developed web sites”
  • Worked on conference papers, then canceled at last minute because I just couldn’t be an academic anymore
  • Wrote about online education  + social media + academy on my blog
  • Created and Recorded Podcast: Undisciplined Room (edited by Scott Anderson)
  • Started work on live-tweeting The Brady Bunch
  • experimented with social media: more on twitter, tumblr, pinterest
  • Crafted first digital story: Student Progress Report: An Undisciplined Account
  • Wrote early reflections on why I find it important to give an account
  • Crafted second digital story: Stories from the UP
  • Played with infographics: http://trouble.room34.com/archives/4027
  • Crafted digital story introduction to TROUBLE blog, which included intellectual history
  • Marked the occasion of three years of blogging on TROUBLE with a series of posts that reflected on importance of site and documented most popular/favorite posts
  • Started working on Problematizes, learning how to use Pixelmatr and experiment with different ways to engage, educate and pose troubling questions
  • Underwent more intense reflecting on life out of school (first fall since 1979 I was not in school)
  • Created story project on the meaning of home (digital stories: reimagining home)
  • Began digital storytelling experiment with digital moments: the worst winter ever
  • Created Undisciplined, the web site and began archiving teaching and research materials


  • Began researching and writing Unofficial Student Transcripts
  • “Published” Unofficial Student Transcripts on iBooks
  • Created a movie trailer for book
  • Continued with digital storytelling (Driving, the Gardner, Double Vision)
  • Returned to learning html, css
  • Edited Grandma Ines’ memoirs and published them in iBooks, w/additional materials + forward and concluding essay
  • Started new site about The Farm, picked theme and coded, designed site myself
  • Began analyzing interactive documentaries, doing research on how people tell stories online, documenting my process
  • Began another digital storytelling experiment with digital moments: Moments with Rosie
  • Wrote an Interactive Media Project Grant Proposal that was not funded, submitted in December: researched, designed, planned 2 year project


  • Gave invited Talk at George Hall Lecture at Gustavus, discussed my book
  • Began Video Game Research and imagined an unrealizable video game about the farm, experimented with son on how to designe video games and realized that it was really, really difficult
  • Decided to actually do the farm project that I wrote the grant for but didn’t get, on my own. Created the site + began writing stories and adding content


  • Wrote first interactive story on farm (only temporarily yours) and shared it with my family
  • Converted processing blog for The Farm story project into STORY (a blog about reading, crafting, telling stories)
  • Re-designed (and modified WordPress 2015 theme) for all of my sites and created a cohesive web presence (a brand?)
  • Turned my iBook, Unofficial Student Transcripts, into its own site
  • Continued storytelling research and experimenting with different tools
  • Researched and wrote about “running stories” as a web genre as part of my celebration of my fourth year of running
  • Began exploring digital archiving, tentatively experimented with better archiving practices, especially for photos
  • Started reading/researching/writing about memoirs
  • Began researching, writing and thinking about teaching life book project
  • Began #undisciplinedreading project, which involves requesting lots of books from the library and reading them to enjoy, not (always) critically analyze

*Note the sarcasm. It’s hard for me to stop working. I don’t really know how to take a break and do nothing. I have been trying; learning to do nothing is part of my undisciplining plan.

Form: Not Quit Lit, part one

I left academia at the end of the fall semester of 2011. Starting in 2013 and then returning in 2015, I’ve been working on a lengthy story project that involves archiving and processing my life as an academic, first as a student, then as a teacher.

My project is not intended to be just an example of quit lit, a public declaration of being “burned up and burned out” by the academy. But I started it just shortly before essays about quitting academic jobs began to proliferate and it is partly motivated by a desire to give an account of why I left the academy. It would be easy to read or write (or write-off) my accounts as just another, among so many, “goodbyes to all that”. But it’s not. At least, I hope it’s not just that. While my project includes several public declarations of my leaving and it includes critical assessments of toxic academic values that led to my leaving, I’m also trying to do something else with it.

But what is that “something else”? As a preliminary way to answer that question, here are two lists to compare: List 1: What can quit lit do and List 2: Why am I doing this?

List 1: What Can Quit Lit Do?*

  • Offers a public explanation (a because) of “why I quit teaching”: because of demanding students, poor salaries, unnecessary bureaucracies, limited opportunities for creativity and self-actualization
  • Enables writer to be seen and heard after years of feeling ignored, devalued and dismissed
  • Allows writer to be a role model for others thinking about leaving and allows them to destigmatize the process of leaving/quitting and debunk myths (you just weren’t good enough, success can only be found with an academic job) surrounding it by making their experiences visible
  • Functions as a public rejection of the Academy and a refusal to perpetuate its toxic practices: a public statement/critique/condemnation of the AIC

*Info about Quit Lit, also known as “goodbye to all that,” “why I quit teaching” and “fuck you, AIC,” was gathered from these Sources: The Atlantic, Inside Higher Ed, Slate, Vitae.

List 2: Why am I doing this?

  • To give an account (and an explanation) of my academic life and to tell a story about why I left and what I’m doing for anyone who is interested (which hopefully includes family members and friends)
  • To take my experiences seriously
  • To confront the haunting questions that living and then leaving the academic life generated within me
  • To do something creative and playful that resists and troubles academic rules
  • To undiscipline myself
  • To scavenge through my past, sorting out and keeping the bits (tools, ideas, methods, theories) that I found helpful, discarding the rest. And then, to use those helpful bits to experiment with new ways of teaching, learning and being a thinking, feeling, troublemaking, educating SELF

While there is some overlap, much of why I’m doing this project fits under “something else.” At least, I think it does.

Map Stack

A few weeks ago, I encountered an article about some cheap breakfast places in St. Paul and Minneapolis. I was intrigued by the tool that they used to map the different restaurants and describe them. So I looked it up. Map Stack. It might be fun to experiment with while telling stories about visiting places this summer…


Here is a disclaimer that I just wrote for the preface to my Troubling Teaching Portfolio:

DISCLAIMER: My troubling teaching portfolio is not a eulogy for a past life, but a celebration of that past, along with my present and future life as a troublemaking educator.

This is a troubling portfolio in which I reflect on and write about my teaching life and materials through the lens of trouble. Much of the trouble that I describe in these pages, is the joyful, life-affirming, potentially transformative, transgressive, stimulating, illuminating, exhilarating, and just plain fun kind. My descriptions of the trouble that causes harm and signals unjust and really fucked up learning environments—the kind that seems to be a direct, if not always intentional, result of “the Neoliberal University”—will be kept to a minimum. This “bad” kind of trouble surely haunts many of my accounts, and I hint at it repeatedly, but I don’t want to give too much energy to it or get sucked back into the feelings of sadness, inadequacy, or grief over lost dreams that it stirs up within me. Besides, plenty of really smart, brave, and insightful people are writing about the problems with the Neoliberal University in much more effective ways than I probably ever could, or would want to.

When I first started this project, I wasn’t intending to avoid writing explicitly about the structural/institutional/political problems with the university. But, after getting seriously stuck in my efforts to respond to an especially annoying article about being a professor, by an especially arrogant and annoying professor, I realized that if I approached this project with anger, a lot of frustration, and some bitterness, my project would lack the joy and passion for being a thinker, an intellectual, a scholar, and a teacher that I desperately want to reclaim. So now as I gather materials and write my stories, I’m working hard to avoid giving into anger or sadness or even regret about what I lost or could have been within the academy. And when I do discuss the problems with University teaching, I’m mostly using humor in the form of snark*, which is more fun and joyful than you might think.

After re-reading this disclaimer, I think I need to add to it just a bit. I also want to write something about my desire to not be too critical of myself, to not devalue the work that I did. 

*One example of my use of snark:

List! Behaving Improperly in the Classroom

  • De-emphasized grades, not because I hated grading, but because I strongly disliked how grades were so often the single most important motivation for why students actually completed assignments and I was frustrated by how students seemed to rarely look beyond the letter grade or point total to the feedback that I was giving them
  • Replaced assignments designed to prove mastery, as in the ability to regurgitate the teacher’s beliefs, which were themselves expected to regurgitate the accepted disciplinary canon of ideas and authors, with assignments that encouraged engagement and enabled students to actually apply what they were learning and maybe even use it after the class was over
  • Avoided giving in-class lectures and having to stare into the dead eyes of students who weren’t listening because they’d mentally checked out of the class the minute I started talking by using the blog for posting my notes and summaries, by distributing lengthy handouts (56) and by devoting most of class time to small group and large group discussions
  • Refrained from giving easy (or any) answers that could shut down curiosity, opting instead for posing questions that invite students to think, rethink, and expand their perspectives, which could be frustrating for some students and exhilarating for others
  • Pushed at the limits of what counted as appropriate “academic” reading/content by favoring online readings over “traditional” academic articles, analyzing popular culture like The Brady Bunch and cooking magazine ads with images of brussels sprouts that look like penises, and discussing theories and projects that involve a lot of swearing, like shit studies, FCKH8, and fuck reproductive futurism
  • Tried, not often that successfully, to be a person in the classroom
  • Persistently worked to de-center myself as the (only) Authority in the class and repeatedly rejected the role of Expert by encouraging others in class to be mentors and sources of knowledge (65), avoiding preaching or presenting material as the Truth, refusing to pretend that I knew everything, or almost everything, and encouraging, almost to a fault, feedback from the students on what did and didn’t work in the class

Bonus: Here’s a post I wrote about snarking and cranking as forms of resistance.