I am writing this post from Mt. Sinai Hospital in New York City. It is not the romantic getaway I had planned for my Labor Day weekend. At all. In fact, let me tell you just what I had planned because it is just too good not to share: a private writers retreat at the gorgeous New Jersey home of an artist friend I met in grad school, complete with a writing and art studio, deck, hammock, well-stocked wine cellar, and floppy dog hungry for me to walk him during my writing breaks. Four days and five nights of solitude, warm skies, and pages upon pages of my book. Sigh. In other words, a dream. But what do they say? Life is what happens when you’re making other plans? Three weeks ago I began to feel that old familiar pain; Friday was the MRI; by Saturday I was flat on my back in a hospital bed again.
It has been fifteen years since I first began to experience symptoms of the Crohn’s Disease that keeps me coming back here.
And eighteen years since I asked God for it.
I couldn’t have been more than 15 at the time. Just young and foolish enough to pray that God would allow something horrible to happen to me. “Don’t just give me the milk, Lord,” I used to pray. “Give me the meat.” I was referring to 1 Corinthians 3:1-2.
And so, brothers and sisters, I could not speak to you as spiritual people, but rather as people of the flesh, as infants in Christ. I fed you with milk, not solid food, for you were not yet ready for it. Even now, you are still not ready.
While other girls my age fantasized about finding boyfriends, I fantasized about suffering as my spiritual lover, Jesus Christ, had suffered, so he would know I was willing to go as far for him as he went for me the day he died for my sins. In one of my favorite childhood fantasies I imagined myself a missionary pulled from my home by an angry mob, a gun is pointed at my head. In the fantasy, I was told to deny my Christian faith, or die. I chose death, of course, and was shot on the spot, sprawling romantically on the ground while those I brought to Christ before I died wept over my body.
I ached to be given the opportunity to prove that I was not what the apostle Paul called a “person of the flesh,” nor what my evangelical Christian youth leaders called a “woman of the flesh,” a sexual threat to men. No. I was divorced from my physical form, a woman of the spirit alone. They could do anything to my body; I would nevergive up my soul.
As an evangelical Christian teenager, I was wholly devoted to a religion that glorifies gore and gorifies God. At the center of the Christian religion is the story of a bodily suffering so terrible that it saved the world. Even Jesus, who lived a perfect life, did less good with it than he did with his death. It was Christ’s suffering, not his joy, that set us free. It was his death, not his life, that allowed us to enter Heaven. So when our bodies were beaten and our hearts broken, my friends and I knew we reflected the perfect life of Christ, whose suffering and death was the hinge upon which God’s plan for the world turned. The more God allowed us to suffer, the more opportunity he gave us to prove our unshakable devotion to him, just as Job, Jonah, Habakkuk and even Jesus had done. Suffering was our opportunity to be someone.
So when I began to experience a mysterious abdominal pain and blood loss from my anus in my late teens, the first thing I did was thank God for the opportunity to praise him through suffering, an experience I was sure would bring Jesus and me closer together, just like Billy Graham said it would. But the second thing I did was schedule an appointment with a doctor. Suffering was all well and good, but God also liked to work miracles from time to time, and often used doctors to do them. The first doctor I saw took one look at me and said my real problem wasn’t pain and blood loss; it was acne. I looked down at my lap, hiding my face in my hair.
Over the past few months, I had been trying to embrace my newly outrageous acne, and was silently cheering on a self-assured classmate rising through the ranks of popularity at my public school despite her own acne outbreaks. That’s right, I would think to myself as I watched her. Our physical appearance shouldn’t dictate our level of confidence. After all, we are creatures of the spirit, not of the flesh alone!
My staunch belief that physical appearance didn’t matter much had become increasingly important to me since I saw a photograph of the supermodel, Shalom Harlow, rocking a “bowl” haircut in a magazine. The haircut perfectly framed her high cheekbones and her eyes looked dark and mysterious peering out from under her thick bangs. I thought she looked like a hot Joan of Arc and cut the photograph out, presenting it to my hairdresser the following week. He shrugged and gave me the cut I requested, shaking his head while he snipped. Afterward, I did not, in fact, look like Joan of Arc. Nor did I look even remotely hot. Under the mushroom of hair that now sat on top of my acne-ridden face, I looked more like Moe from the Three Stooges. Or a chubby Amish kid. Who just happened to smell like rotten eggs since I had started taking the sulfurous acne medication the first doctor prescribed me.
Too ashamed of the physical appearance I told myself didn’t matter to return to the doctor who wasn’t afraid to call me out on it, I scheduled an appointment with a second doctor. He too dismissed me from his office after a short consultation, but this time with the name of an over-the-counter hemorrhoid medication and of a gastroenterologist. The gastroenterologist diagnosed me with Irritable Bowel Syndrome, a cousin of Crohn’s Disease, but before I left his office, he grabbed hold of my arm and told me that if my symptoms were as severe as I claimed they were, I wouldn’t be smiling so much. Clearly, he had no experience with evangelical Christian girls and our truly outstanding capacity for smiling.
My girlfriends and I knew it was our responsibility to represent Jesus to the non-Christian world. The word “Christian,” after all, meant “Christ-like.” So if we were a drag, people would assume that Jesus was a drag. But if we were fun, people may just become Christians, which would save them from eternal damnation. And so, even while we suffered, especiallywhile we suffered, we smiled. We laughed. We wrote people encouragement cards. I even made Christmas cookies and dropped them off at every storefront open on Christmas Eve one year. And when my friends and I got home from a long day of smiling goodness, our smile got even bigger, because we knew it was also our role to be what our pastor called “cheerleaders” for the “football players” in our lives, the evangelical Christian men who faced battles we could not even imagine. You never saw a group of teenage girls so…happy.
The gastroenterologist’s implication that I was someone who would exaggerate her symptoms for—what?—attention?—haunted me for months afterward. I didn’t ever want to be the kind of girl who would ever do such a selfish thing. I wanted to be good, a good Christian girl. Maybe this is a reasonable amount of pain I’m experiencing, I thought. Nothing to complain about it all. Deep inside, I knew something was seriously wrong with me, but when the little voice inside—the one that some call our intuition and that I now call the Holy Spirit—whispered that all three doctors’ diagnoses were wrong and that I would have to fight to be taken seriously or my symptoms would grow out of control, I told it to shut up. I was suffering, I insisted, not because there was some big thing wrong with me, but because I was special.
I decided I would never complain about my pain again, no matter what. I would show them! I would be so good and uncomplaining that I would die if it came to that. I imagined my church friends finding my dead limp body sprawled over a chair in the youth group room and flagellating themselves for having judged me so often when all the while I had been silently suffering, a martyr of their righteous oppression, just as Jesus had suffered at the hands of the “religious” Pharisees.
Eventually, I left for college across the country. By the middle of my freshman year, I was bleeding a quarter cup of blood and intestinal lining into the toilet every ten minutes and had lost so much blood that I had tumbled off of the toilet and onto my college dorm’s bathroom floor. I managed to pull my pants up but I was too weak to stand or even get back onto the toilet to continue bleeding into it. I heard my friend Sebastian’s voice in the hall and called out to him. When he entered, he discovered me curled in a ball in front of the toilet. Helping me to my feet and supporting me under his shoulder, he called a cab and together we went to the emergency room…. (Read the rest of this piece on Feminist.com – http://bit.ly/on_suffering)