bike: 20 minutes
run: 2.25 miles
outside: 9 degrees/ feels like -1
Started the next episode of Dickinson. It’s about death, the eclipse and Emily’s growing affection for her father’s law clerk who is definitely going to die (looked up ED on wikipedia and yep, he dies of tuberculosis). I know a bit of her biography, but I hadn’t remember this guy. According to wikipedia he was a mentor but not likely a love interest. Oh and almost forgot to mention: in the last episode Louisa May Alcott comes over for Christmas dinner; she’s visiting another family and they bring her along to the dinner. The show depicts her as a badass hustler whose primary motivation for writing seems to be money and independence. And, she’s a runner! When she finds out Emily’s a writer, she invites her out for a run before dinner. I wondered if this were true, so I googled it. Yes, Alcott was a runner! Nice. Lousia and Emily ran through the fields holding up their skirts.
About 15 minutes into the episode, I got an alert that I needed to log back into my account to keep watching. Decided to stop and move onto running. Before I ran, I listened to myself reciting my latest poem. Another mood ring: incurable. Then, as I ran, I listened to a little more of Wintering and a playlist.
My mood ring poem, Incurable, is about how my eye disease does not have a cure and how I’m okay with that and it’s a response to my frustration with the well-meaning suggestions by others to go to more doctors and keep searching for a cure. My frustration is mostly irritation and annoyance: Both doctors I have talked to and all of the research I have done clearly states that there is currently no cure for cone dystrophy. Subjecting myself to more tests is exhausting and expensive without decent insurance. And, even if there were a cure it would be experimental and prohibitively expensive. Knowing myself and what I need (and what I can afford), this is not a good idea. Yet, when people refuse to believe me when I say there isn’t a cure and encourage me to keep looking, it plants the smallest seed of doubt–am I giving up? Not trying hard enough? I am not and I didn’t ask for advice. Instead of getting angry, I am writing this poem. Here’s my current draft of the main poem:
No cure. That firm sentence brings relief not despair. No terrible trips to countless doctors. No invasive treatments. No experimental implants. No big needles injected into eye balls. No difficult discussions about how much “good” vision is worth. No energy squandered. Everything devoted to adapting experimenting exploring new forms of delight. Someday there may be a way to repopulate the vacant city of my macula. But not now. Acceptance is not weakness but strength. Strength is not a hardening but a softening. And diminished vision is not a death sentence but a door into other worlds. Put back that sugar and salt. Pack away the preservatives. I do not need to be cured.
A few days ago, after the latest encounter with well-intention nudges from people who love me very much, I decided to free-write about my mood. I wrote down: “No cure. Cured, curing. Cured like bacon.” Yes! I started thinking about the different meanings of cure–to heal + preserve meat, fruit, vegetables + embalming/preserving the body. The word incurable came to me. Then I started thinking of fitting phrases, like “incurable optimist” and “incurable romantic.” And definitions: stubborn, irredeemable, incorrigible. And a passage I read in Georgina Kleege’s Sight Unseen about sighted people’s fear of blindess/vision loss:
The belief that human experience, both physical and mental, is essentially visual, and that any other type of experience is necessarily second rate, leads to the conclusion that not to see is not to experience, not to live, not to be. At best, the sighted imagine blindness as a state between life and death, an existence encased in darkness, an invisible coffin (30).
Incurable is my current mood. While I ran, I came up with an additional line (I do not need to be cured) that really helps the poem. This delighted me and made me happy to be able to write and to run and to use these activities to work through difficult moods.
a moment of sound
Went out into the backyard for my moment of sound. It’s snowing light fluffy flakes. Our crabapple tree is loaded with apples and birds–at least a dozen, at one point. I guess they’re too busy eating to sing. Silently, they feast on the fruit. Looked it up and I’m pretty sure they are robins. Also read that cedar waxwings and cardinals like to feast on crabapples in the winter. Notable sounds: crunching snow, a barking dog, a clanging fence, softly falling snow.