When I’m sick, the world becomes small. I enter a form of meditation, overly aware of the tiniest details — the hair on my arms, my peeling cuticles, the steam rising from the bathtub. On my wedding day, in September 2013, it was no different. I saw the soft curve of the pink flower petals in my bouquet, felt the blades of grass tickling my sandaled toes as I walked toward my husband.
As we stood under the huppah, our guests used programs to shield their eyes from the sun as it set on the Nashoba Valley in Massachusetts. I felt the sun, too. But beneath my warmed skin, vapors of medication flowed through my body, driving me through the day.
Months earlier, I sat in a chair across from a psychiatrist that July, begging for drugs. “I can’t get married like this,” I told him.
While tapping the tip of his pen on a pad of paper, he said, “I don’t think it’s anxiety or depression that’s making you sick.”
I already knew this. I had by then spent half a year trying to convince countless doctors that the weight loss, nausea and weakness I was experiencing were the result of something more than general anxiety.
The first doctor I went to, in January 2013, smiled smugly and said, “You’re just nervous about your wedding.” I agreed to go back on Prozac. In turn, after some insistence on my part, she agreed to order a mono test. It came back positive. The nurse who called to inform me advised I rest for two weeks. I did as I was told, but my body remained stubborn. The Prozac didn’t make me feel healthier, either.
That spring, I visited doctor after doctor, most of them shrugging at my unrelenting symptoms that by then should have dissipated. One doctor finally listened to the possible causes I had found after hours of online research, and agreed to check my B12 levels. I was deficient, and required injections to get them back up. I thought I found my cure, but my hopefulness was soon dashed when I didn’t improve much. At the age of 32, I began to hate my body.
Friends grew silent over my unreliability, my future husband visibly uneasy with the fear of what our marriage would look like with my failing body. The idea of postponing the wedding was dwarfed by the guilt of the time and money already spent by family, and perhaps dwarfed by the hope that my body would come to its senses just in time. But I remained a burden, an annoyance, a disappointment.
“Not knowing why I’ve felt this way — for so long — is making me depressed,” I told the psychiatrist that day in July a few months before my wedding, my voice cracking. “I need something to help me feel normal.”
Instead of throwing myself to the psychiatrist’s feet and clinging to his ankles, I began to cry. No doctor I had seen up to that point had offered me medicine to help with my symptoms, and I was desperate. The psychiatrist agreed to put me on Wellbutrin, an antidepressant that also promised increased energy.
Our wedding venue had a white farmhouse with a small room on the top floor where I got ready. Instead of Champagne, my three best friends and I clinked glasses of ginger ale. I nibbled on a banana, picked mints out of a red Altoids can, smiled for photos and rested on the room’s day bed before making my way to the ceremony. The combination of Wellbutrin, Imodium and non-drowsy Dramamine I had taken, along with some adrenaline, got me through the day.
Under the huppah, as I walked around my husband seven times, I prayed that he would learn to not fear the failing body circling him.
Later, to the beat of “Everlasting Love” by the Black Keys, my husband and I entered the reception tent. We danced, one of his hands on my lower back, the other clasped in mine. When the singer’s voice cracked on the high notes, we muffled our laughs against each other’s bodies — me against his chest and him against my hair.
We were flung in chairs for the hora, connected only by a cloth dinner napkin that we held between our fingers. We sat at our own private table to eat dinner, my husband enjoying the farm-to-table steak while I pretended to enjoy mine, mostly pulling pieces of bread with my teeth.
By this time, I had become good at faking wellness. I danced and laughed like a healthy person. But what I actually felt still haunts me — the sensation that I had gasoline coursing through my veins rather than healthy, robust blood. I barely slept that night, my body churning, queasy from the marathon I put it through.
Looking back at photos from my wedding, I see the ghost of someone I didn’t know, someone who spooked me. Whatever my body was carrying around, refusing to let go, has forever tainted that day.
After our wedding, it took about a year to feel the strength of my body again. As the illness ran its course, months of feeling unwell turned into weeks, then days, and finally the few hours here and there. Now married for eight years, I have mostly left that hollow body behind. This isn’t to say that my body is entirely predictable. There have been flare-ups when I still have days, sometimes weeks, of that old poison in my veins.
Years after I began feeling like myself again, I received some comfort with an answer, a label to slap on the curious condition that plagued my body: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex, under-researched illness that only left me with more questions.
I’m working on listening to my body, resting when I need to without judgment, attempting a form of anger management toward my own self. My husband, by joining me for therapy sessions, is also working toward understanding my body and his reactions to its unpredictability. Each day, we have worked on forgiving each other for our failings, our fears, our resentments, our human tendencies.
It was amid this ongoing process that I realized I wanted to redo our wedding.
“Another wedding?” asked my husband, panicked at the dollar signs that flashed in his mind.
“More of a vow renewal,” I assured him.
I don’t want anything fancy. I just want the moment back so that I can feel it all in full, and not only from those small details observed in my sick meditative state. I want my husband and I to recommit to ourselves and to celebrate my body’s renewed strength, even if it remains unpredictable.
And, so, we have a plan. Sometime in 2023, for our 10-year anniversary we will drive up to Vermont. I envision a field, our two daughters, family, the friends who stuck by me and cheeseburgers on a grill. I dream of being fully present this time — in love with my husband and grateful for the solidness of my body upon the solid ground.
Megan Margulies is a writer based outside of Boston. She is currently working on a book of essays about learning how to trust her unpredictable body.