So when you see me rushing from here to there, trying to tell stories and entertain and seeing everyone I can, know it’s because I’m trying to memorize and ingest as much of the visual world as possible, in case the lights go out.

You might think that I’m rushing from here to there, trying to tell stories and entertain; seeing everyone I can. You would be right; and here’s why.

When I was eight years old, my mother took me to Mammoth Cave. We gawked at stalactites and stalagmites in the otherworldly landscape. Deep in the cave, they turned off the lights.

And in the suffocating blackness, I couldn’t breathe. My panic attack was instantaneous, incontrovertible, a claustrophobic hell. I couldn’t talk myself out of it or soldier my way through it.

Of all the awful things that could happen to me, I knew blindness would render me insane.

And now I also suffer from an incurable eye disease that destroys the retina. Damage to the retina cannot currently be repaired. Vision loss is permanent. I already gaze at a partial void, a smudge in the frame, a reminder of what may one day be my entire world view.

Nobody’s life matches what we see from the outside.

Yes, I’m lucky. Married to the lover of my soul. Enough interest in my creations to travel for work. Which isn’t glamorous. I’d call it exhausting invigoration.

This time, my disease migrated to a different spot in my eye when it reactivated. I was on suppression therapy. It did not suppress.

The next migration could be to my macula or my optic nerve, both of which would be debilitating. We cannot predict where, when, or if it will recur. And so I swallow poison and wait, but I cannot take poison forever. Eventually, I’ll be forced to fight this wily invader on my own.

And on my own, I’ve always failed.

So when you see me rushing from here to there, trying to tell stories and entertain and see as much as I can, know it’s because I’m trying to memorize and ingest as much of the visual world as possible, in case the lights go out.

(I’m not looking for sympathy or platitudes. Seeing everyone I can, as many times as I can, is more valuable to me now than words flung into a communication wasteland.)

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The CDC has been warned about a potential toxoplasmosis epidemic for years. The chance you or a loved one will be impacted by this disease is high.

Happy Holidays to me! It’s been one year of inactive eye scans for toxoplasmosis retinitis. While I will never be toxo-free, I’m grateful to be toxo-inactive.

Here’s a short guide to toxoplasmosis.

What is toxoplasmosis?

Toxoplasmosis gondii is a parasite that attacks the retinas, brains, lungs, and intestines of its host. The most common form of transmission is from mother-to-child in utero. If you’ve ever been pregnant, remember how the doctor told you not to clean out the cat box? Cat feces is toxo’s primary home, though it can also be contracted by eating infected food products.

Is there a cure for toxoplasmosis gondii?

NO. Parasitic infections are notoriously hard to treat and impossible to cure. Unlike cancer patients, I will never be able to say I am toxo-free. It is classified as an infectious disease.

How many Americans have toxo?

60 million, according to the CDC. That means 1 in 5 American souls reading this post are infected.

If so many people are infected, why don’t more people exhibit symptoms?

Nobody knows. People with healthy immune systems tend to fight off the disease. The parasite usually attacks children, causing encephalitis, brain damage, and blindness. Adults with compromised immune systems (think those with HIV, MS, RA, cancer and similar) can also suffer from a toxo attack.

Is the number of people exhibiting symptoms likely to increase?

Yes. Because I was otherwise healthy and had a strong immune system, doctors have studied my case with great interest. For years, the Centers for Disease Control has listed toxoplasmosis gondii as one of five severely underfunded parasitic diseases in the United States. The overuse of antibiotics is one of the key factors they fear will contribute to a major outbreak among the otherwise healthy.

What does toxoplasmosis do?

The toxo parasite latches onto tissue in the retina, brain, lungs, and intestines, and destroys blood flow. Impacted areas die, causing permanent blindness, dementia, schizophrenia, encephalitis, balance disorders, and other problems in the eyes and brain. Attacks in the lungs or gut are generally fatal.

Is there a way to predict where the parasite will strike?

NO. It likely lives in all four areas of my body, but it can only be detected after it has already caused damage or death.

What is the treatment for toxoplasmosis?

I endured a five month, three-pronged treatment.

  1. Primethyamine, the drug the Pharma Bro bought and started charging $15,000 per pill;
  2. Sulfadiazene; and
  3. Folic acid prescribed for chemotherapy patients.

While the maximum recommended time on this combo is 8 weeks, I was on it for five months due to the severity of my case and the fact that prior doctors prescribed treatment that made it worse.

What are the side effects of treatment?

Pretty much every awful thing you can imagine. Seriously, YOU DO NOT EVEREVEREVER WANT TO BE ON ANTI-PARASITIC DRUGS.

How has this disease impacted me?

I have permanently lost 25% of the vision in my right eye. It doesn’t sound like a big deal, but the parasite destroyed an area between my pupil and nose. Those parts of each eye work together to center a person and help with depth perception. As a result, I constantly misjudge distances, struggle to type on my phone, and run into door frames and whatnot. I could see nothing, so believe me, I understand these frustrations are still an upside.

Why should you care about toxoplasmosis?

Because the CDC has been sounding warnings about a potential epidemic for years. 1 in 5 Americans have it. Do the math. The likelihood you or someone you actually care about will be impacted by this disease in our lifetimes is ridiculously high. Most American doctors don’t know how to treat toxo. After being mistreated for two years, I had to enter a study at the University of Chicago to finally get answers.

If you’re pregnant or considering pregnancy, I’m writing about my experience FOR YOU. Demand a test for toxo as part of preparing for motherhood. Your child will be more likely to have problems than you will. Monitoring from birth, as they do in other countries, is key.

This post is part of the Mirror Series. If this is your first visit to the Mirror Series, please click here and follow the arrows at the top right of each post to read the series from the beginning. Thank you for reading!

They always told me the eyes are the windows to the soul, that scary, hidden part of me even I can’t see. When I look in the mirror, I see two white ovals, centered green. My mother’s eyes. Her father’s eyes.

If I haven’t slept or if my body clings to water, they sometimes tinge purple underneath, that unfortunate place where thin skin turns puffy. I’m beyond the age where creams and potions help. My eyes – they are what they are when I awake; they constrict and tear throughout the day. They’re stubborn in their quest to see the world.

Maybe their belligerence comes from the WAY they naturally see the world. When they don’t interact with a filter – glasses, contacts, the logical part of my brain – those gazers can misjudge others. They can expect too much. They catch a piece of a thing and complete a picture that’s unfair. Left unchecked, my eyes make mockeries of reality by imagining finished canvases from glimpses of things.

So, I look in the mirror, face myself eye-to-eye, and try to force my wayward soul to comply with my desire to understand, to accept, to be fair. It’s easy to talk to something I can’t see.

Until my soul winked at me.

In front of the bathroom mirror, it winked. Not one of those flirty, I-don’t-want-anyone-to-see winks. My mouth opened in a creepy grimace. My face elongated, contorted. One reddened eye bulged while the other disappeared in a furrow of rounded, putrid wrinkles. The details of the room behind me disappeared into an abyss. All I could see in the mirror was a monstrous creature, swaying to its own menacing beat, reaching toward me through the glass, threatening to pull me to its blackened side. A melange of decaying inherited features, bits I recalled from old photographs, they tried to suck me through that solo open eye.

I touched my face instead of screaming, just to prove what I was seeing wasn’t real. My vision is not dependable if uncorrected, I told myself. I don’t believe in monsters. That thing – it’s not really there, not who I am. I ran my hands over my countenance, even covered the winking eye, but the ghoul in the mirror did not follow me. My sight was held captive by a single, bloody eye as my fingernails frantically clawed my face. Salty wetness covered my lips, oozed into my mouth. Still, I couldn’t look away from my heaving soul.

It dragged me to the mirror with a violent tug, murmuring in a tongue I didn’t comprehend, yet I understood it meant to enslave me in the world beyond the glass. My feet wore indentions in the floor, grooves that scorched a path to the pulsating reflection of evil. I opened my mouth to scream, but my breath had been replaced by the freezing blast of rancid death, shrieking back at me. An icy, stinking gale blew hair into my eyes. Pain daggered through them as I blinked over the wispy strands. A blink was enough. When I looked again, I was only me.

But, my eyes were altered. Their ability to judge is untrustworthy, a lie. That horrifying visage of my soul, it’s imprinted there. With every blink, I see it, growling back at me.