Every man’s memory is his private literature. - Aldous Huxley

Every man’s memory is his private literature. – Aldous Huxley

I’ll always remember the first time it attacked me, vicious and unrelenting. I drove around a mountain curve late in the day. The angle of the sun was perfect to sear my retina as I vaulted around the elevated stretch of highway. I didn’t think much of it when the black spot remained several days later. The sun was pretty bright, I told myself. It’ll be normal eventually.

Two weeks later, I went to see my ophthalmologist. My eye throbbed with internal pressure, plus black dots and floaters everywhere. He took one look at my eye and ordered every test on earth. “It could be multiple sclerosis,” he squawked the day before Thanksgiving. “Or hepatitis/HIV/rheumatoid arthritis/encephalitis! Gee, why is your blood pressure so high? We might need to have you tested for that, too.”

I spent a Thanksgiving holiday with a blind spot in my eye, wondering whether I was in store for some life-altering news when everyone returned from the holiday and addressed my urgent medical situation no one was exactly treating urgently.

Thankfully, I was okay.

I didn’t have any hideous disease or crippling diagnosis. I was referred to a retina specialist. He took one look at my eye and said, “Oh, you have toxoplasmosis.”

Before that pronouncement, I never understood why pregnant women are told to stay away from cats. It’s a parasite that lives in cat feces. Over two million people worldwide are infected, though only a fraction exhibit symptoms in the brain, intestines, or in my case, eyes. The parasite attaches to the retina and destroys it. Blindness caused by toxoplasmosis is both irreversible and permanent.

Since late 2013, I’ve had three recurrences. Each time, I lose more vision. The black spot grows. I can no longer see my right hand on the keyboard as I type, but I’m grateful I can still read the screen.

But as an otherwise healthy person, I struggle with how to manage a lifelong, incurable condition, something that can rob me of my sight. I wasn’t happy with the “wait until you have a problem to treat it” solutions I was getting, so I did what every medical professional cannot stand.

I googled my condition.

It isn’t for the fainthearted.

I wasn’t looking to scare myself senseless with what might happen. I didn’t care to imagine myself exhibiting every symptom, especially since it would lead to the schizophrenia that’s common with brain-related toxoplasmosis attacks. I just wanted to fix my dang eye.

I found a doctor who’s spent her entire career studying my condition. Rather than waiting for another medical professional to refer me, I picked up the phone and called her office myself. I spent an hour on the phone with her assistant and more time with her. I followed her instructions to enter a proactive course of treatment, and I volunteered to be part of her ongoing study. I’m not sure what this means for my eye, but for the first time since I heard of this ailment, I’m hopeful. I’d like to keep the vision I’ve got.

I share this story to inspire others. Our medical system is currently rife with all kinds of bureaucratic roadblocks. Sometimes going directly to the person who can give meaningful treatment is the best move. In the literature of my memory, I know it will be for me.

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