INCURABLE

mood: INCURABLE

Poem 1 = entire grid
Poem 2 = 
inner circle, central vision that’s left
Poem 3 = 
Blind Ring

Poem 1 

No cure. A stubborn sentence that brings relief not despair. No expensive tests. No inconclusive results. No experimental treatments. No jammed waiting rooms. No needles pickling my eyes. No need for tears. No need for grief. No need for answers. Nothing to fix to make safe to store away for winter. Someday there will be a way to repopulate the vacant city of my macula. But not now. Now is for living and breathing and being outside above the gorge. For adapting and exploring and creating different forms of seeing. For wandering among the sprawling oaks feeling the biting breeze admiring the view to the other side.

Poem 2 

safe
winter
will be
late

Poem 3 

Acceptance is not weakness but strength. Strength is not a hardening but a softening. Diminished vision is not a death sentence but a door into other worlds. Put back that sugar and salt. Pack away those preservatives. I do not need to be cured. 

Resources and Additional Thoughts

There is no cure for cone dystrophy. Treatment is directed toward the specific symptoms that are apparent in each individual. Treatment may include using tinted lenses or dark sunglass in bright environments and magnifying devices to assist in reading and other similar activities.

Cone Dystrophy / NORD (National Organization for Rare Diseases)
from a log entry on Feb 17, 2021

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.

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).

needle injections for wet adult onset macular degeneration

I do not have adult onset macular degeneration, but I remember reading about these injections shortly after my first diagnosis. My doctor didn’t recommend them; I found them during my research.

Most doctors will give you numbing eye drops, then clean your eye, and perhaps eyelids, with a yellow iodine solution. They will position an eyelid holder, so you don’t have to worry that you will blink at the wrong time. Then, they will numb the eye with drops, gel, a medicated Q-tip, or a superficial injection of anesthetic. Many will measure the position of injection, which is often placed in the lower, outer (toward your ear) aspect of the white part of the eye. The eye doctor will ask you to look up, and will perform the injection through a tiny needle. You may feel nothing, a little pressure, or, in some cases, some moderate discomfort lasting a few seconds. Some people see a web of lines as the medicine mixes with the fluids inside the eye.

Injections for Wet Macular Degeneration: What to Expect/ Bright Focus Foundation

Currently, the only treatments available for cone dystrophy are to help slow the inevitable progression of the disease. As I recall from my last doctor’s appointment, there’s no slowing down the destruction of my cone cells.

Cure, cured, curing: some thoughts
  • canned
  • jarred
  • jammed, jam-packed
  • pickled
  • expired, expiration date
  • spoiled
  • shelf-life, stored
  • shelved, put on the shelf
  • decay
  • needed in times of scarcity
  • embalm
  • preserve body for medical experiments
  • dried out, old
  • hardened, tough exterior, leathered, weathered
  • drawing moisture out
  • airtight, removing oxygen, sealing out air
  • inside, packed, put away