Good news comes


The sunlight cascades through the woods and the whole world is magical, time suspended. The carpets of yellow, gold, burgundy like fairy paths under foot. I am learning to see beauty in a whole new way: appreciating it just for it's existence, for the joy it brings me. Not trying to figure out from whence it came or whether I am witness to something personal or universal. It doesn't really matter.

Good news came like a bolt of lightening yesterday, elecrifying the air and sending me skipping back out to my car and back to work. I had my cancer check-up yesterday, as I do every 3 months. At this appointment, I was expecting to get the news that I would need radiation this autumn and winter. My tumor marker in July was 4.9; at 5, we treat the cancer aggressively again. But instead of climbing past that ominous number, my tumor marker dropped. It was an unbelievable 0.02! Almost undetectable, the lowest it's been since December, 2008.

And so we are celebrating - my family, my coworkers, my friends. The every-3-month check-ups will continue for now. I will keep refusing dessert because the diet is obviously working. I've begun doing yoga daily again and hope to continue that practice. I am learning mindfulness - being present in the moment. All these things, might they be helping? I don't know. But I do know that TODAY I am still in remission, and I will not need treatment that would separate me from my family this year of 2013. It is a good place. I'm thankful to be here.

Lighting my own flame

I pre-ordered my friend's book, even though I didn't want to read it. I pre-ordered it right in the middle of losing my own faith, her book about losing her faith...and finding it again. Faith has long since ceased to be a cultural acoutrement of habit, tradition, stand up-sit down formalities. It survived thousands of years that way, by being necessary to people. Necessary because they couldn't read for themselves perhaps, necessary because whole nations grasped desperately at religion as a form of collective salvation from unknowns both here and in eternity. In the performance-driven, every man a minister evangelical movement, we are no longer silent participants in a army of anonymous believers who join us for that hour and stare forward. Then you could hear the rumble of hundreds of hands dropping hundreds of kneelers, the scratch of a thousand shoes tucking under pews, the awe of the silence when every head bowed in confession.

Norms shift and traditions change. We have always lived in a society where questions were welcomed. You get to choose, the Pilgrims said. We have never been Catholic or Protestant solely based on geography here in the new land. Everyone seemed to politely ignore that we are still born into faith, held there by the glue of family and social pressure. Many of us silently protested, our shoes slow to scrape under the pew. Our heads the last to bow.

Evangelicals pull you out of your seat and demand your participation. I suppose that's how I, perpetual doubting Thomas, got brought into the fold finally in my 20s. I had held church and especially church people at a distance since I was raped by one at 7 years old. My acceptance came grudgingly, and really I only laced my fingers into the church's embrace because I wanted to support my beloved little brother.

I lobbed fireballs of religion along with the rest of the church crowd. I did so out of fear. I didn't want to be alone. I didn't want life on earth to be the end. I didn't want to be barred from some place of joy just because I was stubborn and unconvinced.

Does it count to believe if you hold part of your heart back, as afraid of faith as you were of not having it?

Yes, I was on fire once. I turned off parts of my mind and my heart and I jumped right into the flames on purpose. It was my last-ditch attempt to belong. I got 10 years. A decade of wearing the right clothes, keeping a daily prayer list, reading through the Bible according to this plan and that. Wearing the pages out in my search for answers. I walked the walk, I talked the talk. I didn't know what to say to the pain in the eyes of my friends, so I leaned hard on phrases like, "Let go and let God," "Be still and know," "We'll have all the answers in heaven." My girls wore dresses. I wore my hair longer. I tried to smile more. We spanked. We "trained them up in the way they should go" with no regard for who they were, the children gifted into our marriage. I wasn't a steward. I was a matriarch standing proud on the promises. Part of being on fire is knowing the right answers, being so sure of yourself (because it's God telling you how to be) that no one outside the church can question any of it.


Through cancer, grad school, my daughter's brushes with death, losing a son in the midst of the worst of it - the flame of faith stayed lit. It was my only hope in those days. I was clinging with desperation. I consumed whole books of the Bible on sleepless nights praying to get the WHOLE answer, not just little crumbs of it from this passage or that. Some of the tissue-thin pages ripped where tears landed over and over again.

I remember the subtle soul shift that happened the night I was diagnosed with cancer at 28. I was in excruciating pain that God apparently didn't care to relieve. I had begged - everyone I knew was praying, in fact - that it wouldn't be cancer. This couldn't happen to me. But it did...and after I wrestled myself down back into the dark bottle sealed up at my center, I opened my hands and said I accepted it.

I thought trials would be the stepping stones on the way to the top of the mountain. I was numb to the erosion that was happening every time bad news rained down on us. Like a movie-set town in the 1950's, the sets were slowly collapsing in the bad weather. I pushed on them delicately at first, picking parts of my life I hoped I could change on the down-low, without the church noticing.

I quit wearing dresses. I started letting my kids decide what to wear. I started grad school and talked about becoming a nursing professor. For a while I stood still in the stream. Then, I took one brave step against the current.


As I've walked back up the stream, back to where I started when I was just me, the fire slowly went out. There are many reasons. Some of which could be temporary. I'm not a promise-maker at 34. I know how little I know. I am okay with only having answers for today and letting tomorrow arrive, come what may.

There is a little flame flickering again. It's different. It's not blowing over me like wildfire in California and I dry tinder in it's path. That's religion. To say I've lost faith because I ran away from the wildfire is to say I've lost an element of the human experience entirely. I still have faith. I just believe in something other than the church.

I believe every person is beautiful just the way they are.

I believe violence is the product of our blindness to someone else's value and beauty.

I don't believe in predicting the future.

I believe my value and my importance are inherent in my humanity and displayed when I love others. I believe the same thing about every one.

I believe in equality. Freedom to be just who we are.

I can't make myself believe in an entire cosmos unseen, a benevolent creator who is all-powerful, ever-present, interested in each of us to such an extent that we receive daily punishment or grace from this god.

The fire that lights me now is tended by my own two hands. It is my own fire. I built it. Nothing is consuming me from the outside. No more wildfires. Because I am on fire for something new, humane. And fire can't pass over the same ground twice.



Visit my friend Addie's website to view more synchroblog entries

Simply human


The neighbors probably think I'm crazy. I tried to keep my voice down. It came out in tight, painful whispers that had all the pressure of a scream behind them. I shook my fists, I shadow-boxed in the dark like a real fighter. I kicked the dirt so hard my shoe flew off. I flung myself down on my back in the ditch and looked up at the stars and they seemed so cold and far-off and inconsequential. I've never thought that about the stars before.

I've shouted at God to answer me. I've begged him to make me see if he truly is there. I've shaken my fists and poured out my angry heart, and the sky stays silent. The wind blows steady against my face. There are no shapes in the clouds. There is nothing at all. No answer. No acknowledgment. Not even a sense of peace as I stare into the vastness of the universe.


If it is all just empty. If this is all we get, this life. If it's lies or miscontrued ancient teachings or inspired writing or an extension of a set of laws invented in ancient Jewish history. Because it doesn't read "God of mercy" or "God of perfect love". He says perfect love casts out fear, but I am afraid of him. I am afraid of his supposed standards and how my very being defies them. How does one live with those questions? How does one write a "Christian" blog when god and christian just got demoted to lowercase letters?


I don't know what I like to wear. I don't know who I like to make friends with. I don't know how I like to spend free time. I don't know how I ended up where I am, here in the lonely now with 4 kids. I don't know if I like my hair, or whether or not I want to keep wearing make-up, shaving, using perfume.

Giant questions spewing out everywhere with no easy answers. I try to be gentle with myself, trust that it will turn out, somehow. I have begged the sky and received only darkness in return.

I ponder scientific laws and Bible verses, the words of Rabindranath Tagore and the teachings of Jesus of Nazareth. I wonder how much has changed from the Hebrew, the Greek - what has survived and what has been altered, adulturated to meet the standards of the time in which it was revised. How culturally embedded is our Bible at this stage of history?

Funny thing is, I'm sleeping great. And so far I haven't been struck by lightening. 

Sometimes life does go right



The memory of the "before" is as visceral as an instinct. Your baby face floats up from the soup of all the yesterdays I've saved for a rainy day. Chubby cheeks, unquenchable smile, stubborn as a mule. Your spiky blond hair that became paintbrush ends when I put it up in pigtails. From the moment you were born, I had you pegged:

Indomitable.

We named you Amelia, which means "hard working", Irene, "peace". Our last name is an old low German phrase that means "unusual amount of hair". Which is hilarious. Thousands of years later, Thuls are still sprouting copious amounts of crazy hair. And you, my third daughter - you were the girl who was peaceful, hard-working, and crowned with the craziest hair of all my kids.


People who meet you now don't understand why you're still sucking on a pacifier. They stare when you morph from intelligent, well-behaved 7 year old to the moans of a pre-verbal infant when we're out in public. And I think this is cool - the stares, the confusion on the faces.

It means you are so normal, my sweet girl, that most people can't tell anything was ever wrong.


I watch the "before" and I cry. Everything was so....normal. So expected. Lock-step with everyone's plan. Evolving plan, yes - but planned. You were a natural extension of your two sisters, and I thought we were doing fine. I thought we were doing right. I thought it would be like this forever.

I am one who marries plans. I don't date them, I cling to them as if they are my very lifeblood. And when they change? It tears a piece of my heart out, most times.


And then there was after. There was the day you woke up and you could talk a little. You couldn't walk, you couldn't sing, you couldn't play, but you could talk. The infection that had ravaged your brain unchecked while doctors struggled to put a name to it, it stole the Amelia we knew and loved and gave us a new and very sick little girl to care for.

Vaccine-related encephalitis. Even at one of the premier hospitals in the United States, it took months for them to correctly diagnose your problem. 

And now it is 4 years later, almost to the day. World Encephalitis Day was just announced for next year: February 22nd, 2014.

You are a survivor. You are a champion in this story. So many days they said would never happen? They've come! The day you walked again. The day your partial seizures stopped and you began to grow. The day you learned your letters once again. And, at 7, just like every other little kid in the country, you learned to READ.

I love you now more than ever. I am thankful we have had these 4 years. I can't imagine my life without you.

For all the wrongs, you are one right in the universe.


Click to learn more about encephalitis