On Disfigurement and Grace

faith, story

I stepped off the light rail into the damp afternoon air. I craned my neck, looking for a friend, when a man who had been in the same train car from downtown Portland approached me. We hadn’t spoken on the ride. In fact, I had been listening to my “Lent” playlist on my iPod, lost in my own world of thought.

He first remarked about the drizzle that fell lightly on us. What happened to the sun? Of course it rains when we’re off the train. I smiled.

Then he said this: “I like your smile. Hey, you know, I’m an honest person, so I hope you don’t mind me saying, when I first saw you, I wanted to feel sorry for you.” He motioned to his face, a reference to the disfiguring tumors on mine. “But I see life in you. It’s in your eyes.”

“Thanks, sir. I don’t mind at all.”

In fact, I was glad he noticed; I hadn’t that day. We bid each other bye, and walked our separate ways. This wasn’t the first time for such an encounter. However, it was a fleeting moment of grace, which I savored and filed in the back of my mind.

Two days later another knotty tumor appeared on the right side of my face; one more to add to the collection, an even more disfigured face to get used to.

DISFIGUREMENT
Now awaiting the word on what series of flights have been booked to Indonesia, I share this piece of me with you, dear readers, as it is a part of me wherever on this earth I go, whatever that calling may be—and it is very visible.

I have a genetic disease called Neurofibromatosis (NF). A more detailed explanation of NF can be found at the Children’s Tumor Foundation. Brief facts: NF type 1 affects 1 in every 3,000 births; NF2, 1 in every 25,000. Although it is genetic, and parents with NF (types 1 and 2) have a 50% chance of passing it on to each child, half of all cases are a result of a spontaneous mutation. NF1 can cause birthmarks, tumors, freckling, and learning disabilities among other manifestations. There is no cure, no drug yet to slow or prevent tumor growth. Neither is there any prediction of severity or when or where a tumor might grow; they can grow anywhere there are nerves.

I have NF1 with dozens of tumors all over my body, all of which are benign, and most of which are small and underneath the skin. The largest and most visible is the grouping of tumors on the right side of my face.

GRACE
I come from a culture where inner beauty is a nice idea, but that’s not necessarily the signals most often sent to me: I should have more stuff, acquire more wealth, and be thin and beautifully blemish-free; money can buy you all this happiness. Me, well, I’m full of outer blemishes, so I’ve learned to cling to grace daily.

I have difficulty accepting a theology that says God made me right down to my DNA. Who, then, slipped in that faulty gene? Who turns the switch to allow a new tumor? I’ll spend my lifetime supporting research to eradicate this disease—then probably some other gene will mutate to form a new disorder for the world.

Anne Lamott writes about David Roche, a inspiration speaker and man with a disfigured face, in her book, Plan B: Further Thoughts On Faith. Unable to reproduce the whole story, here’s a snippet (p. 111):

There he is, standing in front of a crowd, and everyone can see that just about the worst thing that could happen to a person physically has happened to him. Yet he’s enjoying himself immensely, talking about ten seconds of grace he felt here, ten seconds he felt there, how those moments filled him and how he makes them last a little longer. Everyone watching gets happy because he’s giving instruction on how this could happen for them, too, this militant self-acceptance.

No, I wasn’t given this disease as a test, but I can live to the fullest and notice those raw moments of grace, just like David. I wish I didn’t have the tumors, or that I didn’t have to face a lifetime of wonder when and where the next one will appear. But I will, and I am compelled to share those grace-filled meetings, my love of life and God, and the courage in spite of disfigurement.

I share this as who I bring as a missionary. I may not write of this again, as I will soon be sharing other stories. As I have most of my life, I will be noticing (and writing) moments of grace while I’m teaching English in Indonesia. But most importantly, I mean to share this today: out of brokenness, beauty and wholeness; out of death, life. Is that not part of our faith as Christians? You, too, have brokenness in need of healing.

And now you know what it is on my face when you see photos of me.