Windows to God

By Laura Edwards

Every year, the arrival of the Christmas season leads me to take a step back and reflect on my spirituality.

I’m a seventh generation member of First Presbyterian Church in my hometown of Charlotte, and my dad’s family has an illustrious history there. The only women to be honored with military funerals in the church – the daughter and wife of General “Stonewall” Jackson and the granddaughter and daughter of Dr. Robert Hall Morrison (the first pastor of the church and first president of Davidson College) – are on my family tree. In the early 20th century, a father and son pair from my dad’s paternal grandmother’s family served as pastor and elder.

Despite my family’s history in the church, I’ve never been particularly religious. When I was a child, my family often sat in the overflow section adjacent to the sanctuary on Sundays or, worse, ate a second breakfast at Bruegger’s in our Sunday best because I’d balked at wearing a dress just long enough to make us too late even for the overflow section. I did, however, know the stories of the Bible better than any of my Sunday school classmates, because I got bored to tears during the grown-up church service, and reading the Bible was the only thing my parents allowed me to do to pass time during the minister’s sermon. As an adult, I’ve made it to church very little. I didn’t join a congregation during my four years as an undergrad in Chapel Hill, and my husband (raised Catholic) and I don’t regularly attend church now; in fact, we really only make it for Christmas and Easter – sometimes.

Though I’ve never been much for organized worship, I’ve always been spiritual. I kept journals for years, and every once in awhile, I’ll go back and read some of them. Even during (and perhaps even particularly during) my teenage years, God influenced my words. My third cousin, the late Reynolds Price, once told me that it was okay if standing on a mountaintop made me feel closer to God than sitting in church. Many of the stories written by Reynolds, whose books were published in more than 30 languages, are spiritual in nature, from the obvious (The Tongues of Angels) to the not-so-obvious (A Whole New Life). Several years ago, I studied four of his works, the aforementioned titles included, during a series I attended with my mom at First Presbyterian (one of the few times in recent years that I’ve visited the church grounds on a regular basis). I did some of my best writing in the weeks following those sessions. I wrote a lot about God. And today, though the thought of attending a Sunday service doesn’t make me cringe the way it did when I was 12, I still prefer to search for religion outdoors rather than under the roof of a church. I felt incredibly close to God the morning my husband and I stood on the rim of Utah’s Bryce Canyon in the biting cold of a 13-degree October dawn at nine thousand feet to follow the sun, a glowing ball lifted into the sky by invisible hands, as it illuminated the hoodoos – thousands of drip castles frozen by time.

Rainy LakeI felt just as close to Him one day four months ago, when we hiked to a remote, glacier-carved lake in North Cascades National Park on the Canadian border. When I first laid eyes on that scene, I knew that only divine hands could have created something so wonderful.

After Taylor was diagnosed with Batten disease in 2006, I was angry at God for a long time, and I wasn’t the only one; my mom – a far more faithful churchgoer than I – admitted that she left the sanctuary one Sunday during the sermon, because she just couldn’t bring herself to give thanks to God, at least not that day. I went to counseling for awhile, and my first of two therapists asked me to read a book that he said would teach me to understand that when bad things happen to good people – for example, Batten disease to an innocent, perfect-in-every-other-way 7-year-old child – it isn’t God’s doing – that God feels our pain, too, and gives us tools to face the sorrow that marks human life.

I stopped going to therapy well over a year ago. I’m not sure how much all of those hours spent on couches in counselors’ offices helped me face my sister’s illness and the pain and suffering it has caused my entire family, but I have never forgotten that first lesson. And good thing, because I don’t think I could go through life hating God. If anything, making peace with God has helped me concentrate on what’s good; for example, the sound of my little sister’s laugh or the sight of her smile, both of which make an appearance less often these days and thus have become even more cherished; or the love of my family, which has stayed strong in the face of unfathomable tragedy. Also cherished are the travels that have taken me to some of the most beautiful natural places on God’s earth – those places where I’ve chosen to worship, if silently – and my frequent runs, during which I feel, despite the pain in my joints, that while Batten disease could have only been conjured in Hell, it may knock me down, but it will never beat me.

These are my windows to God.

What Next?

By Laura Edwards

In 1984, Reynolds Price – acclaimed writer, Rhodes Scholar, Milton expert, Duke University professor of English, and my third cousin – learned he had cancer: a 10-inch-long, malignant tumor wrapped around his spine that he came to call ‘the eel.’

Imagine getting that diagnosis today. Twenty-six years ago, the eel was a death sentence. And yet 26 years later, Reynolds is still writing books and teaching his usual three courses at Duke. Seven years ago, when I was 21, I drove 10 minutes from my Chapel Hill apartment to Reynolds’ house in the woods. We spent the afternoon talking about spirituality, Scotch, ginger molasses cookies (inspired by the Foster’s Market molasses cookies I’d brought to share) and even a little writing. That day still conjures up the clearest of pictures and deep-down feelings whenever it crosses my mind.

I’m attending a great class with my mom at our church on Wednesday evenings. It focuses on spirituality in Reynolds’ works. Tonight, we discussed A Whole New Life: An Illness and a Healing. This extraordinary book is the story of Reynolds’ agonizing illness and astounding survival. It was published in 1994, and the first time I read it as a college student, I had no inkling of the sadistic disease lurking in my little sister’s cells. I think that I will read it again. On page 185 of the paperback edition, Reynolds makes a profound statement. At the time of my first reading, my life was free from the kind of pain and suffering that I know all too well these days. In fact, when our teacher at church, the poet/novelist Tony Abbott, brought the passage to our attention in tonight’s class, I read it with virgin eyes, as though I had never encountered it before:

“If belief in an ultimately benign creator who notices his creatures is available to you, you may want to try at first to focus your will on the absolute first ground-level question to ask him, her or faceless it. Again, that’s not “Why me?” but “What next?”

In the early days following Taylor’s diagnosis, I often plainly asked God all possible variations of that question:

  • “Why her?”
  • “Why me?”
  • “Why us?”
I was on the verge of losing my faith entirely in the wake of Batten’s entrance into our lives when I suddenly realized that I was asking the wrong question. Whether or not there was a why, I certainly wasn’t doing anyone any good, least of all Taylor, by questioning the sober reality of her defective CLN1 gene. It was on that day that I decided the only way to fight back was to start figuring out how to play the cards in my hand. Otherwise, I might as well have thrown all my chips on the table and left the game.

Here is another passage from that same page that I simply love:

“My own luck here was long prepared, from early childhood; but as with all sorts of invisible luck, there have been forced treks these past ten years when I all but quit and begged to die. Even then though I’d try to recall a passage of daunting eloquence in the thirtieth chapter of the Book of Deuteronomy where the baffling God of Jews and Christians says

‘I call Heaven and Earth to witness against you today that I have set life and death in front of you, blessing and curse. Therefore choose life so that you and your seed may last to love the Lord your God….'”

Though she hasn’t read Reynolds’ book, Taylor gets it. She’s always gotten it. T greets each new day and bids it goodnight choosing life, no matter how tough things are between sunrise and sunset. A life with Batten disease surely isn’t one we would have chosen for her, nor is it one she would have chosen for herself had she been given a choice of cards. But they’re her cards, and ours because we love her. And because I love her, I choose life for her, too. And here’s a question for Batten disease: you gave us a good fight today. We fought right back. We’re still playing the game. So what next?