I Still Have Glaucoma

A few years ago, I was diagnosed as having glaucoma, a degenerative disease for which there is no cure, that usually affects people decades older than I am. Since that time, my eyesight has become noticeably worse. It is much harder for me to browse a bookstore, for instance, taking in the vast amount of visual information casually. It's harder to shop for groceries also. Things don't jump out at me from the corner of my eye. I also do not necessarily recognize the presence of friends in a crowded room. I really need to look directly at something in order to see it. As I describe this affliction, I worry about the extent to which it makes sense. If I tell you I can still read, but it is sometimes harder to make sense of a sentence because my eye is not taking in all of the words at once, that I don't really have the sense of a thought's simultaneity that grammar parses out into a sequence, do you understand what I'm talking about? Every time I go to a movie with subtitles I worry if I will end up being lose track of information embedded in the cinematic images because I'm prioritizing the visual information of the text at the bottom of the screen, but a person with sight should be able to have the whole thing beheld at once.

I received surgery last year. I was pretty worried about it, not really sure how I would be able to cope with the recovery time. It ended up not being a problem at all, but this is because I didn't actually get the fully invasive surgery that doctors recommended. I am going to need to get eye surgery again this year, this time the kind I was scared I was going to receive last time, essentially. There is, of course, the risk that this surgery could also just lead to me going blind anyway, if something goes wrong in some way. I have become a better patient in the time I've been under the doctor's care - while I used to be very twitchy about having a doctor touch my eye, for reasons I think are fully understandable as instinct, I am now essentially able to suppress this because I might not see the finger as coming right at me, if I divert my attention elsewhere.

In the post-surgery time, I will not be able to take care of myself. Both because I will be waiting for my vision to recover, (assuming for rhetorical purposes that it will, although I'm sure the entire time I wait I will be consumed with worry that I will not) and because I will have stitches in my eyeball which in order to keep from bursting I will need to refrain from doing certain tasks I generally do for myself, like lift and carry groceries home from the store, and bend over to pick things up. I do not think of myself as having people who can take care of me. It is possible I have many friends who will gladly help me whose kindness I take for granted in my possession of a great deal of shame around the idea of asking anyone to volunteer their aid.

I have something like an existential crisis about issues around this disease basically all the time. How would I take care of myself, if I were blind, how would I work, how would I function. What would I do with all the comics and books I have accrued around myself if I no longer had any use for them? How would my friendships even work, in the absence of understanding my self as an "arts person," someone who reads literature and follows the news online, and as someone who takes care of myself, cooking meals and working jobs, earning money? Any desire to have a person close by that would voluntarily place themselves into the role of caregiver is mitigated by the knowledge that I would surely love this person an equal amount in return, and so would not want to burden them with a brutal responsibility.

There is basically no cure for glaucoma. There are, apparently, experimental treatments. One was dangled as an offer a few doctor's visits ago: Maybe nerve function could be restored with electric stimulation. The doctor was doing a study, maybe I could be a test subject. To be a test subject did not guarantee I would receive treatment, of course, there was a 1 in 3 chance that I would be part of a control group and so receive a placebo. Also, if I were in the test and received positive benefits, once the study was up, I wouldn't continue to receive the treatment anyway; the treatment has not been approved by the FDA. After repeatedly insisting to my doctor that I would still like to be considered, and briefly meeting with the doctor administering this study, I never got a phone call about it. Presumably there was something in my chart that made me not an ideal test subject, either the type of glaucoma I have, or how far along I am in my deterioration, or maybe even the statistical outlierhood of my under-forty age. I also just saw an article saying that there could be a treatment found by growing stem cells in mice, but this has never been mentioned to me by any doctor.

You may have noticed that none of these paragraphs really build off the one before it. Unlike four years ago, where I could go from a brief explainer of what glaucoma was to what I was trying to do to combat it, I no longer feel like there's anywhere I can go with this information I have, other than under the knife, hoping for the best, but with a deep ache in my chest of truly unmitigated terror. Even offering a glib "in conclusion, don't get glaucoma" seems pointless in the face of knowing that, honestly, you probably don't have to worry about it. I am writing these words simply because for now I am able to do so, able to type words onto the screen and check my spelling all by my own. At some point between now and when I lose the ability to do so, I might have something more spiritually edifying to share, but for now I am merely marking time while my eyes run out the clock.