My Body(29)

The first sign of a grave illness appeared in my mother’s hands, which began to go numb in her sleep. I’d always admired her hands; they were the same as her mother’s hands: elegantly shaped and feminine without being dainty. I have a version of them, too. She’d wake up to find them curled into each other and close to her face, arms braided together on her chest. She was folding into herself like a flower in a time-lapse video, collapsing in an unnatural rhythm.

Next came the blisters, bold and dark and hard. They appeared when she used her hands: she’d open a jar and an angry-looking blister would show up on the inside of her thumb. Press a button too hard and a blister would emerge at the tip of her finger, purple and flat.

I’d wake often in the middle of the night, worrying, and turn to the task of attempting to diagnose my mother’s illness. I’d search “blisters on hands” and find myself looking at dire WebMD descriptions and frightening images of old men with deep purple circles around their eyes.

After years of my mother accumulating bizarre symptoms, for which her doctors in San Diego offered contradictory diagnoses, my parents and I resolved to go to the Mayo Clinic in Rochester, Minnesota, to see if someone could make sense of her condition. My parents flew in from California and I from New York, where I was living at the time. My mother had booked one room with two full-sized beds, in hopes I would share with them, but I insisted on my own room the day before I arrived. We met at dawn in the hotel lobby, where we picked at dry banana bread wrapped in cellophane.

That first day, my parents walked around the facility in a haze, bewildered by the scale of the operation. My mother carried binders filled with test results and Wikipedia printouts and lists of questions stuffed into a big canvas tote that dwarfed her small frame. I stayed a few paces ahead, holding our schedule and guiding my parents to the right elevator, to take us to the right floor, to get us to the right wing, and so on. I welcomed the distraction provided by the role of manager.

As we trailed through the hospital, my mother called out, “Ems! Remember the fairground?” I looked back and nodded.

It was June and I was six when my parents brought me to the massive annual San Diego fair. As night descended after an afternoon spent petting farm animals and riding the Ferris wheel, they decided it was time to go, but were unable to find the exit. I remembered the panic I’d felt watching my father’s silhouette in the dark as he began to climb a wire fence into a large and swampy bird sanctuary. I called out, my voice confident and sure, “No, Dad! Not that way,” before leading them back toward the colorful lights, over a bridge, past the rides and food stalls, to the parking lot, where I eventually located their car. “You’ve always been so good at navigating your hopeless parents,” my mother said, laughing appreciatively.

By our third day of appointments and several nights of restlessness, despite my best efforts to remain busy in the role of organizer, I could feel the woozies creeping over me. As we arrived at the next specialist’s office, I knew we were inching closer to some revelation. I panicked, sensing that I was beginning to lose the composure I’d held on to since I’d landed. I wanted answers, so why did I feel as if I were about to melt into the beige linoleum floor?

I carefully lowered myself into a chair, trying to slow my breathing. I was relieved that no one seemed to have noticed I was cracking. My father sat next to me with his hands clasped between his knees, face forward, and my mother perched on the examination table. Waiting there, she looked like a little kid, her posture upright and her feet dangling and twisting together. I wanted to hug her.

When the young doctor tilted my mother’s head back and directed a light at her closed eyelids, the room moved in on me. There they were: the yellow and purple circles I’d seen in Google images, described online as “raccoon eyes.”

“You don’t have any eyeshadow on, right, Kathy?” he asked.

“Not eyeshadow, just some mascara,” she said purposefully, like a brave, honest child confessing to an adult. I stifled a sob, picturing my mother applying mascara in the dark of the hotel room, in an attempt to make herself presentable before a day filled with doctors’ inspections.

Now my mother lay on the table, eyes closed, a queen in her tomb. Her hands clasped each other across her abdomen. That’s where I was, I thought. Twenty-seven years ago, her body had been strong enough to hold me inside it. A white spotlight lit up her face as the doctor began slicing into her eyelid for a biopsy. I stifled a whimper in my arm, but I knew she could still hear me. My father avoided my eyes as tears ran down my cheeks. When the doctor switched off the spotlight, I slipped out into the narrow hallway ahead of my parents and sobbed, feeling particularly alone.

After we returned to my parents’ hotel room, my father sank into one of the beds and concentrated on scrolling through his phone. My mother curled up in the fetal position on the other bed, her back toward him.

“Amyloidosis,” I read aloud from my phone, “occurs when an abnormal protein builds up in your organs through your blood and interferes with their normal function.” I continued to read silently. Many varieties of amyloidosis lead to life-threatening organ failure. Treatment can help, but this condition can’t be cured.

I lay down next to my mother and began reading her positive testimonials about treatment, to give her hope, and extreme cases, to show that her situation could be much worse. We were lucky that the protein had gone to her hands instead of her heart or kidneys, I noted. She placed her hand on my arm, listening intently and watching me. “Oh wow. Well, I guess I just feel grateful we know what it is now,” she said. Eventually she fell asleep, her mouth open, her breathing steady. I put the phone down and studied her face, her delicate features textured with fine lines and the occasional subtle brown sunspot. Her thick gray hair, so soft, framed her face. I brushed a tuft off her forehead and thought about the way she looked when she cried, how her brow knitted together and up, and the way her chin quivered like an upset infant’s. Something in her face had always kept a tender na?veté.