Saturday, June 18, 2011

Beautiful Flaws

The disease I have, cystinosis, causes a buildup of the amino acid cystine in all the cells of the body. This amino acid, so benign in individuals without cystinosis, crystallizes into toxic levels and destroys organs in someone like me.

My eyes are saturated with cystine crystals - even with hourly eye drops (which I confess...I don't take hourly) that are designed to dissolve them. These crystals cause eye discomfort and photophobia (light sensitivity). I am fortunate to have dark eyes that seem to be less impacted by the reflection of light. Many people with cystinosis experience such pain in bright conditions that they choose to wear sunglasses even inside, while under artificial light.

This would seem to be a nuisance. And, well, it is. The eye drops - which must stay cold and spoil after a couple weeks - feel good. Even so, who wants to put eye drops in every waking hour? It is tiresome and inconvenient.

Sometimes it takes an outsider to remind us that even our flaws - nuisances, inconveniences, tiresome though they may be - are beautiful. I went to a new ophthalmologist recently. He had never seen a patient with cystinosis.

I tried to prepare him. "My eyes are saturated with crystals," I said.

"I've read about cystinosis," he responded rather matter-of-factly. "This will be interesting."

But no medical textbook, no patient warning, no prior experience could prepare him for what he would see when he looked at my eyes with a slit lamp.

I heard him gasp.

"Oh! It's beautiful!" He looked to my husband. "Have you seen this? You have to see this! It's amazing."

As I looked at my new eye doctor, grinning from ear to ear in spite of himself, I had to blink back tears. They weren't tears of resentment, or tears of anger, or the tears that sometimes come from feeling misunderstood. They were tears of joy. Because he understood perfectly - my eyes are beautiful.

My eyes are a window into my illness. They sparkle with a substance that my whole body is full of - a substance that, despite its toxic nature, forms crystals as lovely as snowflakes. I am beautiful because of what I have endured, because of the blessings I have been handed, and because my uniqueness makes me shine.

As my ophthalmologist rushed out of the room to gather his colleagues for a look at his patient's eyes, I smiled at my husband.

"Beautiful flaws," I said.

1 comment:

  1. Beautifully written, Jessica!! I admire your strength more than you know.