AI rendering of a healthy retina (fundus photo)

Reflection: Apparently, I Don’t Have a Retina Condition

AI rendering of a healthy retina (fundus photo)
AI rendering of a healthy retina, unlike my own

It is the first Saturday morning in a long while we can sit outside on the screened porch and have our coffee without melting. Friday’s afternoon storms have cooled the atmosphere considerably after weeks on end of blistering days, and now a sudden cleansing downpour is a gift from the heavens. Smells nice, too. A clap of thunder sends our young Henry-the-Hound skittering for cover inside the house, inside our bedroom, to his little bolster bed in the back of our closet. It is a bit of sanctuary I arranged there for precisely this scenario. We refer to this action, his urgent taking of cover, as DEFCON 1. It is that kind of morning for him, but a pleasant morning for myself and The Chef and Scout-the-Goldapeake Retriever, who is unimpressed by the storm and stays outside on his belly on the cool rock tiles, where he can survey the lawn and growl satisfyingly at interlopers.

The tiny green frogs who worship this weather are truly in their element, but so goddamned noisy. “Get out of the hot tub,” The Chef commands. The lid on the hot tub is closed, but these little reprobates have moved in and made it theirs. At first, it was just a vacation for them during the chilly months out here on the coast, but now they’ve built a resort with a swim-up bar, there to stay all year. Apparently we’ve created an ecosystem they love, who knows how, saturated with chemicals as it is. So when we flip open the lid to climb in, the first order of business is to gently remove them, one by one, to the other side of the fence.

Seems when nature’s not trying to kill us, it’s trying to come inside.

Nature has also insinuated itself into my retinas, there to stay. This is old news. I’ve been dealing with an insidious disease called presumed ocular histoplasmosis syndrome (POHS) since it emerged in early 2001, and will deal with it forever and ever, amen. The source is an irksome little fungus called histoplasma capsulatum that thrives in soil when the conditions are right, chiefly within the Mississippi, Ohio, and Tennessee River valleys. Basically, birds (also bats) shit into the soil, the fungus grows, you breathe it in, and then it wreaks havoc.

In 2001, my good Knoxville retina surgeon explained that if you were to pull a random sample of people off I-40 where it passes through Knoxville and examine them, about 80% would test positive for histo. The vast majority will live normal lives, never knowing they have it. A tiny percentage will develop problems in their eyes, where it likes to lodge once inside the human body, or in their lungs, where it can be deadly if it’s not diagnosed correctly early enough.

Histoplasmosis demanded risky, delicate surgery in my right eye in February of 2001, and then a dozen outpatient follow-up treatments for recurrences over the next five years. It also required close scrutiny on my part so I could alert my surgeon, STAT, when I suspected a recurrence, and he could then “pound it back into submission,” as he liked to say.

The prospect of vision loss notwithstanding, the ongoing monitoring is the most irksome aspect of this disease, and it’s tough not to let it rule your life. Vexingly, it’s not content to lay low forever, once a light has shone upon it and treatment is applied, but may pop up any time in the future, in either eye. Not only that: It can move around. So the lesions that exist, while they seem benign enough for the time being, may decide to migrate to an undesirable location in the one remaining eyeball that still has good central vision.

We all have shit to deal with in our lives, and this is mine, literally. But about two years ago, more eyeball unpleasantness revealed itself in my remaining ‘good’ eye on a sunny Sunday morning while I stood at my kitchen sink with the tap open, staring out the window at the cloudless azure sky. It was a symptom my Knoxville surgeon years ago had warned me about, urging me to call his clinic immediately if ever I experienced it: black snow seemed to fall from the sky on a sunny summer day.

So the next afternoon I found myself in a little surgery room at my retina clinic here in coastal North Carolina, being treated for a small retinal detachment, and thank the universe I noticed the signs early. I know more about the anatomy of the human eyeball than I ever wanted to in the first place, but my naturally obsessive personality has at least helped me identify trouble when nature stirs the pot, as it did on that day.

What is the point of all this, you may wonder. I’m coming to that.

Last month I received a dreaded jury summons in the mail, along with warnings in bold typeface about the dire consequences for failure to report. Once you get that letter, gentle reader, they own you.

What had not occurred to me initially, however, was the possibility something could go wrong with my eyes while serving on a jury. Instantly I began to panic, and in short order called my retina surgeon’s office, fully expecting a sympathetic ear and a note to hand the court. The purpose of this note was to inform the court I may need to leave unexpectedly, that retinal emergencies can happen without warning.

It is not what transpired.

In the message I left on their answering machine, I tried conveying the situation, underlining my gathering anxiety as much as one can in a brief recording (keep it brief, they urged). They among all people should understand the anxiety baked into the prospect of vision loss, even if it’s not an emergency, right? One assumes as much, and this had certainly been true of the staff at the practice in Knoxville.

Not at my North Carolina retina doctor’s office, evidently. The next day while I was driving to my yoga class, a staff person called me back, and after I explained the situation, and my mounting anxiety as the court date was approaching, she said only, Hmm, that’s a new one on me. (Seriously?) You need to speak with <This Other Person>, who handles requests like these—let me put you through.

I promptly arrived at that person’s voicemailbox, where I left another, similarly brief message, and then hung up.

Waiting for my yoga class to begin, trying to get all Zen on my mat, my phone lit up (not too Zen, I realize). So I stepped out of the classroom into a noisy gym to take the call, where <Other Person> made me go through the entire pitch again. Instead of finding a sympathetic ear, however, I was met with an angry, intolerant, anonymous voice:

You do NOT have a condition, and you are NOT legally blind. We will NOT be writing you an excuse from jury duty. I pushed back with, I have had ocular histoplasmosis for twenty-six years and more recently had a detached retina. How on earth does this not qualify as a retina CONDITION? She volleyed, You are fine to serve on a jury. We will NOT write an excuse.

My blood pressure by now was sky-high I am sure, as in, DEFCON-1 high, also not Zen. In my mounting fury I quite forgot to explain to her that I wasn’t specifically asking for a get-out-of-jail-free card, but instead a courtesy heads-up to hand the judge: This person has a long history of retina issues that may or may not necessitate stepping away for treatment in the middle of a trial. These issues can’t be put on hold for a week.

But she was beyond reasoning with, so I hung up and stepped back inside the studio, where I spent the next hour trying not to hyperventilate. My brain kept trying to process this injustice: Nature spent a quarter century screwing with my eyes, and now some nameless, faceless crow at the retina practice is barking back at me that I don’t have a retina condition. It’s a good thing you were at the end of a phone line, woman, because you’d get some Deb-style Southern whoop-ass if we had this conversation face to face.

Not just that. In the midst of all my downward-facing dogs, and warrior twos, I kept thinking, why do the doctors at my retina clinic, and this person they foisted on me who has obviously not received any kind of sensitivity training, have any skin in the jury duty game to begin with? It shouldn’t be an issue for them at all. Instead, it is between me and the New Hanover County Superior Court, full stop.

So I spent the next hour processing my new reality: The court wants documentation, and now I’m left to sift through piles of old records to produce it myself, when a simple note from the practice would have sufficed. Ironically, the measurably kinder and more sympathetic jury coordinator, who sensed my anxiety via email and later in person, suggested I’d have a chance to explain the situation directly to the judge, not to worry.

It’s tough to put a finger on the most maddening aspect of this story, take your pick, although it ought to be the eye disease itself. Just now, though, being treated as a ten-year-old caught without a hall pass has bubbled to the top of the list.

I can’t change the system, or the retina practice, and one might conclude the doctor I see there has my head over a barrel, except there is an alternative practice on the other side of town. And now, in light of all this and other unspoken problems, I question whether I’m even getting the best retina care at that practice. A leap too far? I don’t think so. Office culture starts at the top and percolates down; quality does, too. I’ve suffered too many fools gladly, long enough, so my next move will be to fire my retina guy.

I leave you with an iconic scene from a fantastic movie, because it so artfully encapsulates the bureaucratic hell that is the American healthcare system, and what happened to me a couple of weeks ago.

Oh, and after wasting a half-day of my time, the court finally decided they didn’t want me for jury duty after all: I, and all the other Group B jurors, were thanked and summarily dismissed.

One thought on “Reflection: Apparently, I Don’t Have a Retina Condition

  1. Sorry you had to go through that shit. Auntie is ready to come up and crack some heads. Unfortunately the last few years handling Steve’s medical appt and such, I have found That reaction by low level staff to be pretty common. Sort of -piss off the pt so bad, she will leave me alone to complain about my job behavior. I hope the new clinic is 100% better in treatment and care.😘

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