The Mongolian word for zipper is “цахилгаан,” which also means electricity or lightning. This amused me so I remembered it, unlike most Mongolian words I was learning. That proved to be crucial. My companion knew some words in English and could translate by pointing or miming, but luckily I knew that word. Otherwise, I don’t know how I would have explained what happened.
My companion and I stood in front of a homemade door in the near pitch-black hallway of a Russian block-style apartment building. Multiple families shared this small apartment, so a new door had been built several feet in front of the actual door to secure some valuable space. A knock on the plywood was hard to hear through the original solid metal door, so some Mongolians wired new doorbells further down the hall.
My right hand must have brushed up against one of these jerry-rigged wires in the dark. One moment I was standing by my companion waiting for the door to open, and the next I was many feet down the hall. Seized muscles in my neck and shoulder pulled my head sharply to the right. My right arm was scrunched up, my jaw was locked shut, and my right ear was ringing. I landed on my feet, but the 220 volts in the live wire threw me down the hall, right before the door opened.
Frozen there, from shock and muscle lock, I watched my companion turn to usher me into the apartment. I was gone. She paused, confused, then slowly turned all the way around and stared at me down the hall. My legs worked so I hustled forward, my head and arm still cramped and crooked. I followed her in.
My companion kept glancing at me as she shared a message, while I sat processing what my body was feeling. I was relieved with each muscle that released. I could move my jaw again (that was nice). Oh — now I could straighten my head . . . and my arm. I flexed my fingers. I couldn’t hear properly for a few more hours, but when I finally had a moment and the mouth movement to answer my companion’s questioning and concerned looks, I whispered that one word, “цахилгаан.” I hoped she knew I didn’t mean zipper.
Ironically, those unrelated words, electricity and zipper, became very related in the months and years that followed. We will never know if it was the electric shock, the chunks of Mongolian sheep fat that I regularly ate, or the hand of God that caused a tiny muscle near my pancreas to seize up. The pain under my right ribs became hard to ignore as I carried coal to yurts, taught English in schools, and hiked around our area.
Ironically, those unrelated words, electricity and zipper, became very related in the months and years that followed.
Before sending me to Hong Kong for examination, the mission nurse scheduled an appointment with the area psychologist. The nurse told me to wait outside a closed door while she talked to him first. I heard every word as she told him what she saw: a stressed, paranoid girl who was likely making this up due to the rigors of mission life in Mongolia. What she didn’t know (aside from the un-sound-proofness of the door) was that I loved the people of Mongolia so much that leaving them prematurely would be the most lasting pain of the whole experience. I was not making this up.
I had a rare and debilitating disorder that sent me home early from my mission, landed me in pain clinics, and had me desperately trying everything from spinal taps, liver punctures and acupuncture, to surgery, extreme diets, and nerve ablation.
I was poked and prodded as the months turned to years. In a Salt Lake City clinic, the tech cheerfully told me, “We just had those two lightning strike survivors in here again!” She hooked up the wires and started the currents that were supposed to retrain my screaming nerves. “I have crackle nail polish!” she said, turning to the friend who had accompanied me. “Do you want to paint her toes or should I?” My friend had pushed aside the couch in her living room so I could stay at her place near the University of Utah while I tried this next-new-thing for two weeks. The question took us both by total surprise so we went along with it, even though I don’t ordinarily wear nail polish.
The tech was so chipper and convinced that she could turn this torture session into a fun girl’s day out. My friend painted my toenails while I got zapped. It didn’t help, the treatment or the nail polish, and the nurse was less chipper afterward, mumbling that the crackle paint would have turned out better if she had done it herself. The treatment wasn’t healing, but the friendship was. I sincerely hope everyone has a friend who will let her live in her tiny living room and even paint her toenails in a strange doctor’s office if needed.
“Because we know so much more than we used to, we sometimes forget how much we don’t yet know.” My father is a surgeon, and he shared this idea with me regarding the medical field while we trekked to doctor after doctor. I feel for my family and friends and how they suffered while witnessing those years, too. I’m forever grateful they dug in right alongside me.
As the pain continued I said, “I wish I had a zipper in my back. I just need to step out and take a break.” “It’s probably better this way,” others replied, trying to help. “It would hurt worse when you got back in.” I disagreed and continued to hope for a zipper.
Any voiced fear made others worry about my faith. “Hurry up and learn the lesson God is trying to teach you,” I was told when no medical explanations were found. “Then the pain can stop.” God was the torturer in that scenario, and the belief that He was causing this for educational purposes became too much for me. Striving desperately to qualify for a miracle while trusting that God was hurting me on purpose proved unhealthy and wrecked my self-worth.
“He’s shaping you,” I heard over and over as I bought groceries from a wheelchair, wore a pillow in a draw-string bag on my back so I could endure a chair, and used a handicap parking pass to get to campus. Sentiments like this left me wondering which of my edges were so rough that they merited this harsh treatment.
Pain slows time down, so the often-pointed-to and far-off eternity wasn’t comforting either as I coped by counting to four over and over in my head. Ten really is too high when the pain is bad.
Instant optimism and spiritual one-liners stung instead of comforted. “Stop wrapping my wound in a pretty bow!” I wanted to tell the well-meaning comforters, “I’m trying to get to the bottom of this and I can’t do that if you keep rushing to cover it up.” Clean bandages over a dirty wound are dangerous — not healing.
I knew the well wishes and spiritual reminders came from a good place. Beautiful, comforting truths want to be shared, but the truth I hadn’t learned until then was that pain needs space. Before I got sick, I sat in a BYU undergrad class listening to a visiting lecturer. She said, “Pain buried alive never dies.” I remember doubting that, thinking “I bet it softens a little.” I learned it does not. Pain needs to be examined, honored, and witnessed. Unzipped, not covered up. But wounds are so hard to look at, which is probably why the white bandages come out so quickly. It’s more comfortable to cover up, or even dismiss.
Pain needs to be examined, honored, and witnessed.
Looking back, what seemed like dirt in the wound wasn’t dirty at all . . . it was just normal emotions and thoughts I wasn’t accustomed to allowing myself to have. Like those expandable suitcases, the box I had placed God into stretched to include the full spectrum of human emotions and experiences, not just the feel-good ones. It also grew to include Heavenly Mother, who whispered songs into my head when I hurt the most. (“When you can’t see past the night, your Mother holds you tight.”) I leaned into a new-found hunger for Jesus, and His ministry felt like a medicinal balm. He wept with others and invited me to lock eyes on Him instead of my constant striving.
I wish I could wrap my old self in a hug and say, “It’s not your fault. Your weaknesses and shortcomings didn’t cause this. Sometimes life hurts, and Jesus hurts with you.” I had grown up hearing talk after talk about how He suffered so I wouldn’t need to, but I couldn’t figure out how that applied to physical pain. Turns out, it helped to simply know that He felt forsaken too. If He wasn’t a sinner for not feeling peace during struggle, maybe I wasn’t either.
After years of advocacy, we booked a flight from Salt Lake City to Seattle to see a specialist. We were following a breadcrumb trail mentioned but dismissed years earlier because of how risky the test was. I had been turned down by the Mayo Clinic and had to press the university hospital just to get the doctor’s name. At a medical center on the sloped streets of Seattle overlooking the pier, I finally received the rare “Sphincter of Oddi Dysfunction” diagnosis. A risky but straightforward surgical procedure released the tiny seized muscle near my pancreas, so it no longer blocked pancreatic and bile fluids or inflamed my liver. And like a zipper being opened in the slowest of motion, rung by rung, the pain eased as I worked to regain some sense of strength and normalcy.
I’m one of the lucky ones. The patch of skin on my back that never regained normal feeling after the shock still tingles when I try to find a comfortable spot for my bra strap, but I got to step out of the daily constant pain. Many do not, and under their beautiful skin is a lightning storm they must endure daily. My humble respect goes out to all who live with chronic pain and illness.
If I ever get the chance to create in the ever-after, I’ll suggest more zippers.
Ashley Mansfield Hoth lives deep in the Washington woods with her husband and three young children and is passionate about art, the outdoors, and hammocks.
ARTIST STATEMENT
If Only
Charcoal on paper, 20 x 16 in.
When I lived with chronic pain, I wished I had a zipper in my back. I longed to be able to step out and take a break. For this piece, I spread charcoal dust over white paper to tone it, then I used charcoal pencils to sketch myself with the zipper I wished was there. Many live with pain for much longer than I did, and there is an invisible storm under their skin. This drawing is a tribute to them.
Ashley Mansfield Hoth
@ashleyhoth_art
