Eyeballs

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In my weepy New Year’s Eve post to Diana, I casually mentioned some vague eyeball woes. There was an immediate outpouring of concern from my (2) loyal readers, wondering just what these woes were. Did she see something horrible, like “Justice League?” Or something kind of disappointing like “The Last Jedi?” Unfortunately, the situation is worse than too much CGI.

When we first started dating 15 years ago, Diana told me she had a disorder called Pseudoxanthoma Elasticum (PXE). I totally ignored it and went back to trying to convince her to marry me, move to Evanston, have two kids, one dog and purchase an ugly Hybrid car.

For those of you reading this on parchment and not near an internet search engine, the National Library of Medicine says “Pseudoxanthoma Elasticum (PXE) is a progressive disorder that is characterized by the accumulation of deposits of calcium and other minerals (mineralization) in elastic fibers. Elastic fibers are a component of connective tissue, which provides strength and flexibility to structures throughout the body.”

For the last decade and a half, PXE caused a few little bumps on Diana’s skin. Diana barely noticed and paid it no mind. Just little bumps. No big deal. This evidently angered PXE, because it decided to escalate to the nuclear option: Diana’s eyes.

PXE attacks the eyes in two ways. First, it causes angiod streaks, which are too complicated for my advertising brain to understand. The results are bleeding and scaring, which leads to blindness. Yes, I wrote the B-word. The only way to treat this is to get repeated injections directly into your eyeballs. Let that sink in a little bit. To keep from going blind, Diana has to get a needle poked directly into her eye. Often. It’s as painful and uncomfortable as you think it is. It totally knocks Diana out for days and leaves big red bloody splotches in her eye.

If you thought that was bad, let me introduce you to atrophy of the eye. PXE can atrophy the retina (or the goop around the retina) and this also causes blindness. Blindness that can’t be prevented by painful shots in the eyeball. This is the bad one. Can’t be stopped. Can’t be slowed down. It’s The Terminator of PXE.

Unfortunately, it’s what got Diana’s left eye. Diana has permanent loss of her central vision in her left eye. The best way I explain it is make a fist in front of your eye. That’s what Diana sees. Nothing in the center, but kinda clear around the outside.

Now, punch that fist into your face and you’ll feel what Diana feels emotionally when the eye doctors say it might happen in her other eye as well.

Diana is taking it far better than any human should. She took one day to cry and drink wine. Now she is fighting back by darkening every PXE experts’ doorstep on planet earth. As of this writing, she is booking a trip to New York to see about some clinical trials.

The boys have taken the news well. It’s hard to understand partial blindness in your mom. I did use it to yell at them a few times when they were being jerks over break. Pulling the “your mom is going blind” card when trying to get them to put on their PJs is dirty, but I am more than willing to do it.

I’ll let you all know how things go. Send any spare good vibes Diana’s way when you get a moment