On Disfigurement and Grace

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.

Delicious Ambiguity

Morning Light
I wait for the Lord, my soul waits,
and in his word I hope;
my soul waits for the Lord
more than those who watch for the morning,
more than those who watch for the morning.

(Psalm 130:5,6)

Waiting. Each morning I arise and wonder, is this the day all loose ends will finally fall into place? And when, oh when will I have that visa?

Today, while out running under the gorgeous afternoon sunshine, I was reminded of Psalm 130. Over the years, I have often returned to this Psalm in times of waiting. For the time being, I’m occupying an in-between space with a pile of clothes and medicines stacked in a suitcase in one room and my 9-month old niece playing and learning to crawl in the next.

Xmas Day runThroughout my life, running has been a stress release and spiritual practice. Today was no different. With each stride next to the dry sagebrush of southeastern Washington state, I pounded anxiety away and praying, hoping in God.

These thoughts have come to me because this date is about the time of my original anticipated departure for Indonesia. Or so says my letter of agreement, drafted and signed back in the fall. Though still young in years, I have lived enough life to know things don’t always go as planned. Waiting, I know, is hard; but God is still here. God is here in this ambiguous space, and though I am impatient, I have peace.

Back in late July, in those few days of waiting after my interview at ELCA headquarters in Chicago and before I knew I had this position, I came across a quote. At my church (Church of the Apostles), we always have “Open Space” in the middle of worship. It is a time for prayer, reflection, and interaction. With an unknown future on my heart and mind, I walked a labyrinth during the open space. In the center was this quote:

“…some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.
Delicious Ambiguity.” — Gilda Radner

It is nighttime now, and like in the Psalm, my soul waits more than those who watch for the morning. Tomorrow, I will arise again, and wonder, is this the day I will know when I’ll depart for Indonesia? Is this the end or the beginning? But, sometimes in the end is the beginning, and they are indistinguishable.

I take this time of waiting and delight in life’s many blessings, hoping for the many blessings soon to come. Delicious ambiguity, indeed.