OUT-OF-BODY EXPERIENCES

Denial Is My Spiritual Practice

Martha

I sat at my Baptist grandmother's Formica-topped kitchen table and watched her send carrots down the chute of her juice machine. Long slivers became bright orange juice in a glass. I asked to taste it. My four-year-old taste buds expected something sweet like the Tang the astronauts drank, with the velvety texture of the V-8 we bought in a big can. Instead it tasted like earth and went down like eraser crumbs. I did not ask to taste it again, but I did ask my mother why Grandma drank that awful-tasting stuff. I was a grown-up before I got the full answer. My grandmother was on a quest to improve her health, for reasons not merely medical but metaphysical. Her diet did not require carrot juice; rather, it excluded other things she liked. She viewed her ongoing gallbladder troubles as a warning from God. Her charismatic fervor for the juice machine matched her spiritual enthusiasm to figure out what God wanted from her and to offer it with all the energy she could muster.

The subtext of her efforts influenced my mother and, therefore, me. By generational osmosis I learned that ill health was explained by either blame or guilt — someone gave me a sickness through their sinful carelessness, or I caused it by my own sinful neglect of God's temple, my body. These theological understandings inclined us to a shamed silence about illness. Surely this prayerful woman knew more than we did. My grandmother left those she influenced with the impression that God's approval could be lost and won based on our own actions. I'm not claiming she disbelieved grace. I think she viewed her efforts as a significant supplement, just like the juice.

In my childhood, a polite silence about chronic health problems prevailed. Today, we live in the era of pharmaceutical advertisements promising to abate the symptoms of chronic illnesses. Happy people pack suitcases or fold laundry despite their rheumatoid arthritis (RA), play with their grandchildren thanks to help for their diabetic nerve pain, attend carnivals unafraid of their irritable bowel syndrome, and participate in outdoor activities even though they have lung cancer. Today, I see these short stories through the lens of my life with RA. In one television ad, a young woman sadly admires a pair of red high heels in a shop window, the implication being that she cannot wear those shoes due to her disease; RA can inflame or damage the little joints in our feet. Later, she leaves the store wearing the shoes, her life changed by an injectable biologic medication. These images treat chronic conditions as something curable, when the truth is that living with a chronic illness requires, for most patients, a lifelong commitment to self-care that does not always succeed at combatting the illness or its symptoms.

Growing up under my grandmother's influence left a mark, despite the contrary views I gained through my life experience, theological education, and spiritual discernment. In the back of my mind, in the depths of my heart, in the deepest recesses of my gut lingers a primal fear that I have done or am doing something wrong: a shame about being ill. A shame-based understanding of illness, or of any other bad things that happen in our lives, is fueled by the overriding narrative of popular Christian churches and groups based in the "prosperity" mindset. If we do things right, God will reward us. If we are suffering, God must be testing, or worse, punishing us.

My first symptom was a sore shoulder that wouldn't get better. I blamed it on shoveling the late February snow. My doctor sent me to a chiropractor, who rearranged me, gave me exercises, and then finally released me, saying he thought we had helped the shoulder, but there was still something; he just wasn't sure what. I remember he touched my hand and my wrist as he said it. I brushed it off. I believed I would get better.

A few weeks later, while attending a conference, I found I couldn't knit. My hands were sore, stiff, even swollen. My colleagues noticed the yarn and the needles sitting in my lap. My feet looked fat — well, fatter than usual — in my sandals. Shortly after returning home, I woke in the middle of the night and could not bend my fingers. The next morning, I had to call my twelve-year-old daughter to open the bedroom door because I could not turn the handle. That night my knee felt as though someone had driven a sword into it.

I called my primary care doctor again and began a journey through the medical system: back to her office, then down the hall to sports medicine for a check on my knees, out of that office to a physical therapist — the one who finally saw the symptoms and heard the history that made rheumatoid arthritis the most likely diagnosis. His mom had it, and he saw how the pieces went together. He sent me back to sports medicine, where the doctor spent more time telling me how sad her colleague in primary care was than she did asking how I felt. I'm a pastor, so I pastored her. There was no room for my feelings.

I'm not advising going to Dr. Google for advice, but when you look up RA (which some patient activists would rather we called rheumatoid disease), the first thing you see are the pictures of deformed joints. I wish I could say my concern was functional — could I knit? Hold a pencil? Fix dinner if the joints in my fingers went sideways? — but the truth is I didn't want my hands or feet to look like the pictures on the internet. My then-husband was away for an extended period when I got the news, but returned in time to go with me to meet the rheumatologist. I remember trying to explain why it mattered, when it seemed obvious to me that anyone hearing important information from an unfamiliar specialist ought to have a support person along. Why did that seem so mysterious? You find out in these moments what kind of person you're letting in close, who actually cares, and who only wants to be with you in good times. I remember sitting in a restaurant, crying, admitting my fear that I might not be able to do all the things everyone expected me to do and the things I loved to do.

"I don't want to be all taking and no giving," I said, in an odd quote of 9 to 5.

I heard the reassuring answer, "You have given a lot, it's okay," but he would soon speak his truth: "I want to be a lover, not a nurse."

You find out who really cares about you when you are ill. A good friend became my best friend when she researched the illness and told me things I didn't know yet myself. An acquaintance living with RA became a dear friend and shared the Scripture that kept her going:

Strengthen the weak hands,
and make firm the feeble knees.
Say to those who are of a fearful heart,
"Be strong, do not fear!
Here is your God.
He will come with vengeance,
with terrible recompense.
He will come and save...