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.

FIND OUT HOW ENTERTAINING MY BOOKS ARE. BUY THEM HERE.

Facebook Comments

comments