Ghost Disease by Julie Danho

by Julie Danho

The Allman Brothers wailed endlessly about “Elizabeth.” I was half asleep when a man, weaving through the maze of blankets, stumbled over my legs. He raised his hands in apology. I stood up to try and catch sight of my mother, who had wandered away for a “better view.” At six feet tall, she was easy to spot. Even at twelve, I knew I had to keep an eye on her.

She leaned over the fence that separated us from the pavilion. She looked, not at the stage, but at the sidewalk below her. Then she threw one leg over the black bars.

“What’re you doing?” I yelled, and my mother laughed as she lowered herself to the other side and gestured toward the seats.

“Hurry,” she yelled back.

I muttered to myself as I grabbed my backpack, jacket, deck of cards. I left our blanket. By the time I hopped the fence, she’d run halfway down an aisle and I raced after her without even glancing around for security guards. I knew I would’ve followed anyway.

My mother headed down one of many empty aisles, one hand on the small of her back. Just as I prepared to drop my jacket in the center seats, she climbed over two more rows. When I caught up to her, she was still standing.

“You’re really pushing it, don’t you think?” I said, sitting down with what I hoped was finality.

“You’ve got to lighten up, babe.” She brushed a curl off my cheek. “I was waiting for the security guards to stop paying attention. This group of kids jumped the fence and while they were chasing them…” She grinned. “I know what I’m doing.”

I believed her. I did. And I knew what she didn’t say that her back bothered her again and she couldn’t sit on the lawn for the rest of the night. The rest of the night felt like it could be forever; I listened for signs that this first song might actually end. I thought maybe I’d missed the switch so I asked Mom, and she shook her head. Then she rose to her feet, pulled me to mine.

I can’t remember what she wore that night, probably jeans and a sleeveless shirt, gold hoops in her ears. What mattered was how she moved, with the rhythm I didn’t inherit, her long dark hair like a wild pendulum, her hips and arms matching the boozy beat, her eyes closed, her foot occasionally, deliberately, tapping mine. If you’d told me then that this was the beginning, that she’d be sick for years, that at times she’d struggle to move at all, I would’ve laughed. I would’ve said: ‘Just look at her.’

***

I’m standing over my mother, holding four pills and a glass of water. She sleeps on her back, pillows under her neck, each elbow, each knee, one under her left foot. I’d like to describe it as almost queenly, this excess of softness. Except, like the pills, it’s for the pain.

“Mums, c’mon, sit up,” I whisper. “Mums, Mom, you’ve got to take your pills.” She shakes her head and turns away from me, pulling up the yellow sheet as she rolls. We began this scene when I was sixteen, and eight years later, we still don’t have it down.

I lean over her without touching and put the glass near her hand. “Here.” She takes the water, and with her head barely off the pillow, eyes half-shut, she opens her palm. She drops one of the pills.
When I give it back to her, her hand’s already sagged, the water about to spill. We start again.

I leave the glass of water on her nightstand, make sure her alarm is set. I turn off Dateline. My father calls this, “shutting your mother down,” and it’s actually his job now, since I left, first for college, then graduate school. We have to laugh at what she mumbles when we wake her, asking if it’s morning, if she missed Oprah, if birds are really flying around the room. Most nights, like this one, she doesn’t want the pills, says, “Go away,” or “Leave me alone.” She never recalls what she says while hovering in that world, between sleep and waking.

Though my mother’s in bed by seven or eight, sleep is useless before the pills, which she can’t take until ten if she hopes to sleep the night. Many people with fibromyalgia — pain in the soft fibrous tissues: muscles, ligaments, tendons — have not slept in years. My mother can barely glide past liminal Stage One sleep to reach Stage Four, where the body repairs tissues, replenishes neurotransmitters, and heals muscles. Something in her is drawn to this limbo world; the doctors don’t know if the pain first caused the sleeplessness, which elevated the pain, or if the sleeplessness caused the pain.

And the pain. I don’t know how to explain it any more than the doctors can explain fibromyalgia(and, as my mother says, “they have no fucking clue”). They’ve got their theories: a long-lasting virus, too low levels of the hormone somatusium, which produces deep sleep, too high levels of substance P, a neuropeptide that helps nervous system cells communicate about painful stimuli.

All I can tell you is this: some days I cannot touch my mother. I cannot circle my arm around her shoulder, rest my weight against her hip. I cannot embrace her as she taught me to embrace; but wait, I’ve got it wrong. I should say I shouldn’t touch my mother. But I do and she lets me, because there’s little else to do. If you have fibromyalgia, you have pain everywhere the left side, the right side, above your waist, below your waist. The doctors diagnosed my mother by pressing specific points all over her body, to see if her muscles’ throb matched fibromyalgia’s map, its particular constellation of pain. She said those are called the tender points.

I imagine that the magazines next to her bed are a thin circle of ice, something she could slip on in the dark. I pile them on her nightstand. I put her shoes in her closet. I kiss the air just above her cheek. When I’m away, I can almost forget how I used to listen for her during the night a cough, a moan, a creak like she was climbing out of bed sent me running to see if she needed anything, and often left me standing there, watching her sleep.

***

It’s not like I didn’t notice, or wasn’t concerned, that my mother hadn’t left her bed in days, her back thrown out for the third time in six months. But she acted as cavalier as she could; we ate Saki’s pizza in her bedroom almost every night while watching MTV and discussing my day at school. She wanted to know everything but I was fifteen and left out a lot, particularly the tall, bony pizza boy with arms and legs covered in dragons and Chinese letters. I didn’t actually see him at school anymore, just at our door, and suspected he’d dropped out. Though my parents were former hippies and played Hendrix loud enough to make the floors pulse, there were still things that didn’t fly in our house.

I wanted to ask the pizza boy to the sophomore hop but since I could barely articulate hello, my friends and I decided the best plan was to order a pizza and hand him the cash folded in half, my phone number tucked inside the bills. My mom had been out of work a week before I gathered the courage. I trembled for at least an hour afterwards, and my mother finally pushed an afghan toward me and said, “Put on a hat too.”

The phone rang that night at eleven o’clock, and I jumped out of bed to answer it before it woke my mother. She’d been asleep for hours. When I heard the low male voice on the other end, I gripped the collar of my pajama top, almost cutting off all air intake. I talked to the pizza boy in conspiratorial whispers, watched myself jump up and down in front of my dresser mirror as he said yes and then, “So, did you want to go on a regular date too?” After I hung up the phone, I jogged around the room to burn off some excitement; it was too late to call any of my friends. I climbed into bed and tried to sleep so I could wake early and talk to them.

I was still awake at two, when my parents passed my bedroom door, my mother in a short-sleeved nightgown, hunched into my father’s arms, his arms almost carrying her body. She looked barely conscious, stumbling as if she’d not yet learned to use her limbs. They paused outside my door. My father bent over her so they looked like one bowed body. I didn’t know if I should get out of bed and take my mother’s other arm, help her make those last few steps. Yet this felt like a scene I shouldn’t be witnessing. I heard my father’s murmurs but couldn’t make out the words he used to urge my mother to move. I put my shaking hands under my pillow, pressed my head hard on the cotton.

When she straightened her body beyond a ninety-degree angle, they took the last few steps to the bathroom. My father grabbed the doorframe and rested his head against it for just a second. Then the bathroom door closed. I shut my eyes, prayed for my mother to be better, prayed to fall asleep. I heard the shuffle of their footsteps as they made the trek back to bed, but couldn’t look again.

I didn’t fall asleep for hours. When I woke, I didn’t mention my date to anyone, kept it hidden like a little spot of pleasure I could return to again and again.

***

After that night, I used to imagine her falling down stairs, slipping in the tub. I begged to stay home from school to take care of her. This was before we knew her pain wasn’t something you could die from, that it was chronic, a syndrome rather than an illness; doctors have to know the cause before they label something an illness. When the fibromyalgia began, my mother was thirty-eight, and attributed the back pain to a bad back flip she’d done into her high school pool, thought the dull ache she’d always felt had just suddenly gone electric. It seems ridiculous now, but family physicians, rheumatologists and orthopedic surgeons had told her for years, “Everyone gets fatigued. And as for the pain, the tests aren’t showing a thing.”

My mother kept her illness as quiet as she could, and in a way, her diagnosis began with her worry for me, the day I rushed into the kitchen and flung my leg on the counter. She stopped chopping vegetables as I pulled up my flowered bell-bottoms to show her the bruises, big as my fist, that rose up bluegreen purpleyellow. It’s not that bruises were anything new; after all, I was the girl who walked into walls, gave herself a black eye with the telephone, had dirt tattooed in her elbow. But I didn’t remember when these bruises might have happened. My mother put down the knife to run her fingers over the bumps; I watched the way her dark eyebrows almost met over her nose. That was a bad sign. When she said she’d call a hematologist, that was worse. I could turn anything into tragedy, but my mother had less fear.

When my bloodwork came back, Dr. Crowley told me I suffered from anemia, which was partially responsible for the bruising. “But,” he said, as he pushed his glasses up the bridge of his nose, “the bloodwork revealed something else as well.” He paused. “It was the best case scenario, really. It wasn’t leukemia, any form of cancer.” When he said lupus, all I could think of was an article I’d read, about a celebrity who’d died of the disease. It was the only time I’d heard the word before.

Lupus causes parts of the body to recognize other parts of the body as foreign and attack itself. In my case, my blood recognized other parts of the blood as foreign, which was why my legs looked like dysfunctional rainbows. Dr. Crowley believed my case of lupus to be mild, and didn’t know if I’d recently acquired it or if the disease had slept in my veins for years. The fatal danger of lupus is that the body can mistake organs the lungs, the kidneys, the heart as foreign and stage a friendly fire attack.

On our way out of the hospital, my chest felt so tight I thought my heart was already under siege; I resisted the urge to lie down on the tile. The hospital muzak mingled with the lupus, lupus, lupus in my head. My mother squeezed my hand and I tried to smile, tried to forget the fear in her eyes when Dr. Crowley spoke. The past few days I’d toyed with a tragic heroine fantasy, but that had lost its appeal fast. Fast, my heart was beating fast.

My mother suggested we stop in the hospital’s cafe, Au Bon Pain, and I nodded, though I wasn’t sure I could swallow anything. She ordered two coffees while I found a table. Taking deep breaths, I tried to compose myself. I didn’t want my mother to see me upset. Not that she was fragile, emotionally anyway, but I knew how badly she wanted me to be happy, and I hated to disappoint her.

She carried the tray to the table and took a sip of her coffee, so long it seemed like a drag of a cigarette. When she looked across the table and smiled, her eyes disappeared, the same way mine always did. People who’d known my mother years ago often stopped me on the street, and I’d learned to recognize the startled look, like they’d just seen a ghost. Even before they said, “God, you’ve got to be…”

I chewed on a wooden coffee stirrer. “Do you think we really look alike?” I said, searching her face. The same straight nose, symmetrical lips, jutting collarbone, yes. But her skin was olive, hair dyed red, and those long legs.

“Yes,” she said. “You’re going to be fine, hon. You just have to be careful, that’s all.”

“Of course,” I said. All Dr. Crowley suggested was that I come in for periodic bloodwork, pop a few iron pills. And wonder how long it might stay dormant.

She thumbed her red-brown lipstick off the mug. “I always thought you’d grow out of the bruises. You used to bump into anything. Trip over air. I remember asking the pediatrician about it.”

“I liked him,” I said, meaning Dr. Crowley, who had, both times I’d seen him, talked to me about Emily Dickinson’s poetry.

“I did too,” she said. She sighed. “I might make an appointment with him.”

I sipped my coffee, then focused on the floor to keep my stomach calm. When I looked back at my mother, she stared past me, her shoulders slumped, her mouth a red dash. My guilt tasted like tin. I’d put on my mother’s shoes that morning because she couldn’t bend over. I’d driven to the hospital because she had a stabbing pain in her neck. Pain backpacked around her body yet I, somehow, had been labeled sick. But perhaps I was also secretly relieved by the diagnosis, because if only one of us was to be sick (both was just too much), better it be me. My mother knew how to take care of me. I didn’t know how to take care of her.

In the next few years, we’d realize only one of us was sick. My mother read an article about fibromyalgia and showed it to Dr. Crowley after one of my appointments. He said, “Yes, I bet this is it,” and she continued to see him even after I stopped. I never developed the other signs of lupus (butterfly rashes, joint achiness) and when I left for
college, all of my bloodwork showed I was healthy. By the time other doctors suggested I never had lupus at all, I knew that lupus and fibromyalgia were related diseases, and that they can appear in tandem, fighting in a body like sisters.

But that’s all in the future. Coming home from the hospital, my mother insisted on driving and whipped the Bonneville around 1-95’s curves as I clutched the door handle. She glanced over and said, “You’ve got to live a little.”

***

In the year between my diagnosis and my mother’s, her doctors believed they’d discovered the touchstone of her pain an ovarian cyst the size of a tennis ball. But before she underwent the hysterectomy, I heard a lot of whispering behind closed doors, too much, it seemed, for a serious but standard operation. Still, I convinced myself if something was really wrong, they’d tell me.

When the surgeon called to report that my mother was fine and in recovery, and great news, it wasn’t cancer after all, I didn’t respond. He asked, “Are you there?” and I managed a thank you before he hung up and I threw the cordless on the kitchen floor, watched it spin like a propeller.

No one was home so I raged around the house, picking things up and slamming them down.

When my aunt called, she was too relieved to care that I’d been yanked in and out of a bad dream so fast the world spun. It wasn’t my parents I was angry with (if I were them, I wouldn’t have told me, and, to be absolutely honest, I wouldn’t have wanted to know), but I was terrified the possibility had ever existed. I hadn’t allowed myself to imagine such a thing, although cancer was, in retrospect, not an irrational thing to fear.

I never said anything to my parents. My mother came home the next day, and my father helped her climb the stairs to the bedroom. Halfway up, she stopped and said, “I want one of those damned grandma chairs for my birthday.”

I sat next to her bed and described, in detail, the food her co-workers had brought over all day: meatloaf, bread pudding, Italian wedding soup, fudge that I ate between breaths. My mother worked as the secretary for the middle school when she was able to work; she had to take at least a month off each year.

This wasn’t the first time since the fibromyalgia started that she looked undeniably sick, wan and pale, a fresh scar as illustration. But it was the first time we had something definite, surgery, to explain why. And people had something definite for which to express sympathy. Few know how to acknowledge the invisible.

My mother watched as I picked rose petals off the arrangement from the Sunshine Club, and tore them into small, velvety shreds. “Babe, go try on your prom dress. I want to see how much we need to hem it.” She lifted her eyebrows. “Maybe we can see about that slit you want.”

Three weeks ago, my mother had woken me up with one hand, the dress long, red, wide straps, a nice cleavage dip in the other. Nine a.m. but she’d already done Filene’s one-day sale and picked out the dress, which I loved. “I knew you would,” she’d said, as I rolled out of bed to try it on.

“Why were you shopping?” I’d asked, after twirling a few times. “You said yesterday you felt awful.” She’d just shrugged. “I feel awful today. But until I can’t move, I’m going to shop.”

I carried the dress into my mother’s room and stripped; no one in my family was modest, except for my father. “Oh, you definitely need silver shoes,” she said, propping herself up on the pillow.

“Strappy,” I said.

“My God, isn’t the prom next week? When are we going shopping?” She paused. “I’ll be able to shop maybe by Monday.”

“The hell you will,” I said.

“We’ll see. What’s Tom wearing?” She said my boyfriend’s name with a mild disdain, though she claimed to like him. I was still hung up on tall, thin and questionable men (the pizza boy turned out to be a drug dealer).

I grinned. “A suit and red sneakers.”

“Tell him he better be careful with my daughter. I could be dangerous, you know.” Despite her present condition, I didn’t doubt it. My aunt had once told me, “You’ve never seen your mother get angry. Never.” And of course, at that time, she must have been furious at the doctors who didn’t take her seriously, furious at her body’s betrayal. Yet I only glimpsed hints of that rage. Partly because she was too tired to express it, and partly because, close as we were, we edited our lives, leaving out what invited too much empathy.

Before she fell asleep, I kissed her cheek. “Don’t try to take a shower alone in the morning. Wake me up.”

She nodded before closing her eyes.

At five the next morning, I thought I heard someone call my name. I woke slowly. It sounded like rain. Running water. I stumbled out of bed and pushed open the just ajar bathroom door, the room heavy with steam. My mother was bent over, both hands hanging onto the gold bar above the shower door, water beating on her dazed body. For a moment, I was too stunned to move. Too stunned at what could have been had I not heard, not woken up, that I only sucked in a huge humid breath and stared. Then my arm around her waist and her slick and slippery and I tried to hold her up, brace myself against the sink so we both didn’t tumble over, her body draped over mine like a broken tower. Our hands shook and we headed straight to the bedroom, her arm around my shoulder, no time for a towel. When she collapsed on the sheets, I pulled the quilt over her. She ran her hand through my hair as I knelt by her bed and bawled.

***

Some days I think I know what it feels like to be my mother.

Like the day after the night my best friend Melissa drove me to a bowling alley in her father’s Ford Explorer. I laughed at something she said when we stopped at a stop sign. We had just graduated high school and I was giddy with our ability to plow through the world, arms outstretched, ready for anything. Melissa didn’t see the car coming at us until she had already pulled out. So she stepped hard on the gas and made the left turn. I don’t remember this. What I knew one moment was laughing and the next the SUV running off the side of the road, down an embankment. The world slowed so I could remember the moment, the way I didn’t even own my lips when I saw the tree in front of us how I couldn’t even say a word. I didn’t think, “I’m going to die.” I thought, “I’m going to be crippled.” But Melissa kept steering until we flipped and hit our right side. Then the roof. Then the left side. Then back on our wheels.

I couldn’t have said then how many times we flipped. I couldn’t have said for sure I was alive. The roof had caved in, the windshield shattered. But we stumbled out of the car. No one was there to help us until we reached the top of the hill. The woman who called the police from her cell phone reported it as a minor accident since we were able to climb right out of the car. I didn’t know pieces of the windshield had lodged in my neck and arm until Melissa cried, “You’re bleeding.”

The ambulance came and said we didn’t have to go with them, we weren’t hurt badly enough.

My father later drove me to the emergency room. The next day my whole body screamed. I hadn’t screamed while we flew down that hill, when we shook on the side of the road, when the nurse plucked glass from my skin. But the next day my body kept going down that hill, being flung back again and again, every time I left my bed or walked around the house. Sometimes even when I was still. I didn’t think then of my mother. She took care of me until I could move through the world again.

***

The T roars into the Museum stop, its yellow eye illuminating the station. My mother and I have just gone to the Boston Fine Arts Museum, where I lost her in Contemporary Art, then found her half an hour later, lying on a marble bench in the calligraphy exhibit. “I figured you were looking for me,” she said, as she lifted her hand so I could help her up. “I thought it’d be better if I didn’t go anywhere.”

I’m on spring break from grad school and we’re on our way to the North End, to meet Melissa for lunch. I thought Mom wouldn’t want to come but she insisted she was up for it. When we left the house this morning, she grabbed my grandfather’s cherrywood cane out of the closet; I’d never seen her carry a cane before and thought it was a good idea. But my fists curled the first few times I looked at it.

Pushing our way onto the crowded Metro car, we grab poles by the door seconds before the train lurches forward. My mother’s wrists have ached the last few weeks, and she grips the pole as lightly as she can and still hang on. I see the struggle in her jaw, but I wonder what, if anything, is visible to others. From the outside, she looks younger than 47; even on the inside, her body doesn’t disclose its pain. On X-rays, blood tests, even MRIs, the fibromyalgia isn’t visible. It’s a ghost disease, causing pain but leaving no physical marks. No one will offer my mother a seat unless they spot the cane sticking out of her shopping bag.

I scan the train car for signs of shuffling: a reach for a purse, a closing of a book, any indication that a person might be leaving. When an elderly woman in a pilled coat shifts, I inch toward her.

Other passengers stare, and shake their heads. I try not to care. My mother must know I’ve slipped away, but her eyes don’t follow me. Her weight leans hard on the pole, the metal a second spine.

The train stops at Northeastern. Two people in seats leave but a couple quickly snags their place. I try and gather the courage to ask someone for her seat, but I’m not sure how, what, to explain. I’m not sure it’s my story to tell.

At Symphony, more people push inside. No one leaves and I’m trapped in the middle of the train, pinned by briefcases and arms and baby strollers, and the panic welling in my chest is the same panic I felt at four when I lost my mother in the grocery store. I’ve got to get back to her. I can’t see a thing from behind these businessmen, but I imagine her whole body flashing like a siren, like an emergency that isn’t an emergency, like the pain that doesn’t warn of danger but is the danger. They’ll think I’m crazy if I ask them to see it, hear it. And the thing is, I can’t hear it myself. I’ll argue with anyone who dares to suggest it’s all an imagining, but some days I wish it were true.

At the next stop, I push my way toward the door, and there she is, sitting down. I almost laugh with relief. My body takes longer to recognize that everything’s fine. I’m still breathing hard when my mother pulls the cane off the seat beside her. “I saved you one,” she says.

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