Tag: Neurofibromatosis

What Gives Me Life

What Gives Me Life

megsthewanderer

For those of you who know me and have followed my journey for awhile know my personal struggle with the genetic disease called Neurofibromatosis. To those new to my journey, it is apparent when looking at a photo of me that something is different. This post is about living with Neurofibromatosis type 1 (NF1), and what actually gives me life.

NF1 is a genetic disease that, among other manifestations, causes tumors to grow on the body anywhere there are nerves. Half of all those with NF1 inherited it from a parent, the other half because of a spontaneous mutation of the NF gene. NF1 occurs in 1 in every 3,000 births around the world. There is no cure, although drugs are currently in development that may help slow and/or reduce certain tumor growths.

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Hiking on Mt. Emei.

Back in October I noticed a social media post from the Children’s Tumor Foundation (CTF), a non-profit organization aimed at raising funds for research of all NF-related disorders, raising awareness, and patient support. A big gala fundraiser was approaching, and they wanted selfies from the NF community to use during the event.

I had just returned from a fantastic hike on Mt. Emei and emailed my selfie on the mountain, adding that I was in China with the Peace Corps. The PR-manager thought that was great and asked if I would write a personal story for their website. You can read the post here. In fact, when I sat down to write my story, I took inspiration from an original post on this blog, On Disfigurement and Grace.

When I applied to the Peace Corps and accepted the invitation to serve, I knew the medical clearance process was going to be a challenge—as it is for many of us. But I knew I would have the additional challenge of seeing specialists to document the disease and support me that I was healthy enough to serve with these tumors. I’m grateful for supportive specialists and the medical insurance that allowed me access to them.

It is true that every day when I look in the mirror, it’s a challenge to go outside. But as you can read on this blog and elsewhere, I choose to live and do that which gives me life. I’m proud to be serving in the Peace Corps and happy to have traveled all over the world.

megan-Indonesia

On Disfigurement and Grace

megsthewanderer

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.