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.)

If you are close to one of my events, please come to see me! Check out my calendar for more info. If you want me to come to your area here’s a short list of appearance ideas and contact info.


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.