Mothers of Sparta

by Dawn Davies

  Sjogren’s also affects the throat, causing a painful hoarseness that comes and goes, with laryngeal pain that splits up into the ears. I have profound tinnitus and a progressive hearing loss that may be Sjogren’s-related. Everything feels hot. Hot eyes. Hot throat, hot skin. Hot mouth. I have not yet mentioned the unconquerable overall exhaustion that leads you from the sink back to the bed, to the refrigerator back to the bed. To the laundry machine and back to the bed. Out to the grocery store and back to the bed. Gone are the days of P90X, fifteen-mile bike rides, and hoisting the free weights like a Russian power lifter.

  Internally, Sjogren’s can cause a reduction of mucous gland production in the digestive tract, and eventually affect internal organs, which I hope will never happen to me. It can also cause neurological problems, such as neuropathy in the hands and face and legs, which I already enjoy. I periodically reach down and wipe the nonexistent ants from my toes, or have to check to see if there is an ice cube melting in my socks, or fiberglass in the bottom of my feet. Having Sjogren’s syndrome also increases your risk of developing lymphoma, a type of cancer, something I want no part of, no way, nohow.

  Basically, Sjogren’s dries you up like a ninety-year-old lady and makes you as tired as an old hound. Skin? Like a paper towel. Throat? A dog chew. Lady bits? Barren enough to make sex a desert. Nose? Painful burning on inhalation. Eyes? Like rocks in a dirt hole.

  Nope.

  —DAWN S. DAVIES, ON ATTEMPTING A SUN SALUTATION IN JUNE 2014

  Some mornings, when she is in the middle of an autoimmune flare, for that’s what autoimmune disease does—it flares like a forest fire—she wakes and can’t straighten her knees or flex her feet. She folds inward, circular, insular, like a burnt fiddlehead fern, or an old, toughmeat goat, eyes slit sideways behind sandpaper lids, hands fisted into hard hooves with brittle tendons that will not soften in the sun. She hobbles out to the back patio and does yoga in the heat, hoping it will help. Her back is a crook. She attempts downward dog, and when she presses into the V shape, she bleats, “Owwwwwww.” A goat’s body does not bend into a V. She goes inside and lies down on her bed of straw. She picks a piece and chews it. She presses her lips open and closed. Meeeeeehhh. It’s hell getting old, she says, though she is still several years away from fifty, and the women in her family live into their nineties. She closes her eyes and dreams of younger days in the sun, when she leaped over high hills and butted people in the head. Meeeeehhhh.

  Stop looking things up on the Internet.

  —HUSBAND, ON HEARING THE SJOGREN’S THEORY

  One morning before I was diagnosed, I woke up with my tongue stuck to the roof of my mouth, my eyes stuck shut, my voice a ghost of its former self. I rolled over for my phone and Googled my symptoms. Got a hit. I felt my way out to where my husband was and croaked, “I don’t mean to be a hypochondriac or anything, but I think I have Sjogren’s syndrome.”

  So I go to my primary care doctor and say, “I think I have Sjogren’s syndrome.”

  “You think you have what, sweetie?”

  “Sjogren’s syndrome. It’s an autoimmune disease. They say you are more likely to get it if you already have an autoimmune disease, which I have.” I explain my symptoms.

  “I know how autoimmune disease works, and I’ll tell you what. You don’t have another autoimmune disease. It’s probably just the beginning of menopause combined with some seasonal allergies. Your throat looked awfully red. Probably some postnasal drip.”

  “But I’m not in menopause,” I say.

  “Well, you’re getting awfully close.”

  “I’m forty-five. My mother was in her mid-fifties.”

  “Everybody’s different, hon.”

  “But there’s nothing in my nose to drip.”

  “I’m still going to prescribe an antihistamine to dry you up. You’ll start feeling better in a couple of days.”

  I leave the office feeling stupid. I take the antihistamines, which, indeed, dry me up so vigorously that I cannot open my eyes for two days and my sinuses begin to crack and bleed. My throat becomes so dry that I don’t speak without pain for the better part of three months, the symbolism of that not being wasted on me. My larynx is terribly affected by Sjogren’s. It is inflamed. It is hoarse. It hurts to push air through it. It hurts to eat. The pain makes me use a heat pack and an ice pack, which I switch back and forth because neither one works.

  I used to talk too much around people who knew me; I always thought about myself and talked about myself and put myself first as a child above all else. It was always about me and I let everyone know it. Me me me. My ideas, my what-ifs, my lava of dreams and desires frothing forth from my mouth as if I had a disease that made me vomit words. Even when I was doing it, I knew I was doing it and couldn’t stop. I could hear the tone in my parents’ voice that said they were just marking time through a conversation until I would shut up. I know my husband’s mmn-hmm. And my ex-husband’s. When I was little my mother told me she would pay me if I could make it from the grocery store to home, about a three-mile distance, without speaking, and I never earned a dime. I couldn’t do it.

  Now I don’t speak unless I have to. I gesture wildly. I use my eyebrows. I text my children, who are sitting in the same room with me. Sometimes they answer me out loud, but sometimes they text me back.

  I saw a werewolf drinking a piña colada at Trader Vic’s.

  —WARREN ZEVON

  At social gatherings she becomes a changeling, a long-legged werewolf, skittish and resentful of the people eating and drinking and living it up as if they own their own time. There is no smile. Wolves don’t smile. There is a baring of the teeth. She circles the outside of the room, sniffing the smell of the food she cannot eat because she is suddenly allergic to most of it. In the corner, someone approaches and offers a piña colada, as if she is trapped in a gully and the drink is a hunk of meat with a tranquilizer in it. She says no, but inside she snarls it. Don’t you know I can’t have that? The wolf cannot tolerate alcohol. One glass of alcohol does something inside of her that jump-starts an arrhythmia in her heart, a series of premature ventricular contractions that last for several hours. She was admitted to the hospital once after half a glass of champagne. A piece of chocolate or cup of coffee might trigger a dysautonomia that makes it impossible for her to walk upright before one P.M. for several weeks. She lopes around the house, head low, sometimes on all fours, to keep from fainting. For the most part, the wolf stops going out. It’s far too tiring. She lies in her corner, tail curled around her hot body. Licks her nose. Sleeps.

  It’s not Jeffie. It’s Jeffrey.

  —JEFFREY

  Why do I have Sjogren’s? Perhaps the payback fairy finally found me, the one who has been hot on my trail since I teased that poor boy Jeffrey on the school bus in elementary school, even though I knew he would be unable to defend himself, with his stiff, rectangular smile that masked his pain, his confused eyes, his soft, white underbelly, his divorced parents. Does your mother call you Jeffie, Jeffie? Does your father? I said the word “Jeffie” in a condescending baby voice, which is probably when the payback fairy, the one who floats quietly inside the hoodies of bullied children, got my name and put me on the list. I’ve moved around a lot but still—she’s a fairy and fairies clearly have otherworldly advantages of all sorts, spells, et cetera. Perhaps she finally caught up. Perhaps the payback fairy used Google Earth to locate my house, and eased like smoke through the window air-conditioner unit, and cast a spell, boo-ya, bitches!, that I never again be allowed to open my eyes without scratching my corneas, drying up my lachrymal ducts with a smitely kind of spite, requisitioning all my tears as payment to Jeffrey, who was running around Hoboken, or Duluth or Akron, in a lifelong deficit, having depleted his own supply of tears in the fifth grade on account of being bullied by a girl. He had been an unmanly, sensitive boy who cried, which is probably why I teased him in the first place.

  Perhaps the payback fairy has taken back all my tears and given t
hem to everyone I ever made cry, a friend or two, relatives, my children, a few choice boyfriends whose hearts I wounded. Perhaps I owed them their tears back. Each morning I feel my way to the kitchen sink, where I have a washcloth ready. I run hot water over the washcloth, then feel my way over to the couch and lie down, pressing the washcloth to my eyes. I lie there until the washcloth cools. Then I do it all again. A few minutes later, I peel my right eye open, feel a sharp pain across the surface of it, as if several pieces of sand have been set there, like little tiny diamonds, in the night. The action of my lid against my cornea scratches my cornea and my right eye slams shut like a safe. Sometime later, my left eye opens partially, though I cannot will it to stay open, and I walk around cocked in the head, wearing my goggle glasses so the air won’t touch my eyeballs and dry them out further. I use whatever drops they give me. I cannot see. The bat wings unfold and I use them to pat my way through the house, touching simple landmarks: the bar stool, the refrigerator, the coffee table in the living room, squinting through the eyelashes of one eye. This goes on for months. Payback fairy done got me good.

  Fuck a knuckle, look! There’s nothing coming out. Not one tear!

  —DAWN S. DAVIES, POINTING AT EYES DURING THE DEATH SCENE IN TERMS OF ENDEARMENT

  I first realized something was wrong on the day I drove away from a weekend of visiting my daughter in college, when, welled up with emotion at the sight of her waving good-bye, this long-limbed beauty of my soul, this baby with her chin wobbling and her brave face on, I felt my eyes stinging, and my nose pinched up in that familiar burn that comes right before weeping … only no tears came. There I was, my face screwed up, my own chin wobbling like a hobbyhorse, a small sob choked in my throat, and I had nothing to show for it. It was like puffs of smoke coming from my eyes. There is something about the crying process that gets stunted when no actual tears release, so I stopped trying. Cleared my throat. Drove home and started looking things up on the Internet. A season later, after seeing a general practitioner, an ENT, a rheumatologist, an ophthalmologist, an optometrist, a neurologist, another special kind of neurologist—this one a sadist who tested my muscles with needles and jolts of electricity—and an infectious disease specialist, I am the proud owner of another autoimmune disease. My Sjogren’s is “mild,” they tell me, so it is up to me to decide if I want to take the dangerous immunosuppressants or TNF inhibitors they commonly prescribe, the ones whose television commercials read like death threats, with lists of side effects such as low platelets, liver damage, holes in the intestines, bloody urine, hair loss, severe infections, and certain forms of cancer including, once again, lymphoma. I don’t want to take these drugs, so my treatment includes a strict anti-inflammatory diet recommended by my rheumatologist, and management of my symptoms. “It shouldn’t be too bad,” say all my doctors, who are male. “You’ll be fine. A lot of women have this.” They say this with the same panache that some men tell women that semen is a fantastic facial skin rejuvenator. As usual, I feel dismissed.

  She can go take a flying fuck at a rolling donut. She can go take a flying fuck at the moon.

  —DAWN S. DAVIES, AFTER LISTENING TO A CHURCH LADY SAY THERE IS NOTHING PRAYER CAN’T HEAL

  After one doctor tells me I need to improve my vitamin D levels naturally, I buy a blue bikini, my first bikini in years, the same color bikini I wore in junior year of high school, and start sunbathing for ten minutes per side on the days that I remember to do it. A friend tells me to soak in seawater whenever possible, because the water is filled with magnesium, which when absorbed transdermally, may reduce some of the pain I am in. So I go to the beach on a hot spring day.

  It’s crowded. I pick a place that is not too close, nor too far away from others, and spread out my towel. I start on my stomach first, checking my watch for the ten-minute mark. I’m tired so I lie there quietly, sand in my fists, listening to the muffled sounds of voices over the lower growl of the waves. I peel open one eye and see a ring-tailed lemur walk carefully, on tiptoe, across the hot sand. I do a double take. The lemur is sporting a rhinestone harness in an odd place on its body, low and under the arms, and the harness is attached to a leash, which is attached to a woman who has a gaggle of fascinated children following her. One child, barely a preschooler, a pink boy with a fifties side part and fat cheeks, young enough to still have dimples in his knees, crawls behind the lemur with his hand out, trying to catch a feel of his tail, until his mother snatches him away. I put my head back down.

  The steady growl of the waves is comforting. I taste salt in the air like tears. Around me are families and friends adjusting bathing suits, flipping themselves like hamburgers, spreading out towels, digging into mesh bags, snacking, reading, napping, wiping sand off bottoms, running back and forth to the waves, moving umbrellas, a collective consciousness of beach culture, with a din of all the noise they make floating thinly somewhere above the sound of the waves, in the way that sound travels funny at the seashore.

  My back is hot. It is almost time to turn over. The roar of the ocean is growing louder. I look and there is nothing. It recedes to a normal roar. A man with a phlegmy throat says, somewhere near the back of my head, “I don’t let it worry me. I don’t worry about much these days.” On my eye side, a pucker-tight father has just arrived with his little girl and is already chastising her for getting sand on her shorts. I close my eyes again. Cover my face. Listen. My salivary glands shoot pains in my neck, traveling up to some inside part of my ears, and I wonder about lymphoma, or another kind of cancer that would cause this kind of pain. I’d like to cry but that’s not happening.

  The waves sound closer than they should. Anticipating the tide, I peek out, and see a garden-variety wave pull away from the shore. I go back to thinking I am fine. Then I hear it again. Below me, toward the shoreline, I see families being nipped in the ankles by the waves, snatching up their toddlers and blankets and beach chairs, and moving back some yards. I figure I still have a few minutes so I drift off, thinking of the fire in my throat, the grit in my eyes, the uncertainty of autoimmune disease when you are in a flare and you think things will never be better than they are right now, when your joints hurt and you can’t stay awake, or concentrate, or swallow food, or blink with ease, and your feet and legs burn, and you can’t stand up without your autonomic nervous system shooting you the bird and causing your blood pressure to plummet. You think, when you are in a flare, in the middle of another cyclical low-grade fever, that you might die, or at least be better off dead, because you can’t see well, and you can’t hear well, and you can’t even swallow. That if this is what you thought life in your forties would be like, back when you wore your first blue bikini and your future was like a constellation in the sky, sparkly and hopeful, and not quite real, then you might have done some things differently. If your forties are like this, what’s going to happen in your fifties? Sixties? Will there be a fifties or sixties? Sometimes you’re not sure you want there to be.

  The roar of the sea becomes larger once again, but you can’t fool me four times. Twice, yes, three times, usually, but not four. I grew up on the beach. I know how long it takes for a tide to come in. I don’t open my eyes.

  Then I feel the first small lick at my feet, like a tease, like a cool balm on my angry, neuropathic feet and legs. I think it is my nerves playing tricks on me. I ignore it. Then the wave is up and back, then it hits my crotch, and I realize the tide is in much faster than I anticipated, so I roll over and sit up, and I see that the sea is not messing around. That it is coming in now like a quiet storm, all business, and it is quickly up to my neck, so I stand up, and the people who were down at the shoreline are floating in the water, past me, as it fills up the land, picking up plastic things, coolers and buckets and balls and umbrellas. I stand up. I am tall, but it pulls me off my toes and sets me alight in its swell of salt. The weight lifts off my joints and I feel a relief.

  All around me people scream and reach for each other. The uptight father has grabbed
ahold of his little girl and a Styrofoam cooler, and they float past. To my left swims the lemur, his tail dark and wet. I reach for him but miss and he bobs away with the sun hats, and bottles of sunscreen, and colored umbrellas.

  My face is hit by the salt water, and it feels like all of the tears that I have wanted to cry for months but have not been able to. It fills my eyes, washing my corneas with saline, and I feel an instant relief. I press my face into the water, and open them. My eyes, for the first time in months, are moist, salinated. My lips feel supple. The roar of the water has masked the ringing in my ears. I no longer think about my body, my dried-up state. I am carried up with the flow of the water, with hundreds of others, past the rows of cars, past the preserved sea oats, past the parking lots and restaurants, past the intracoastal line. We float over the bridge, brushing over million-dollar properties.

  This sea is a sea of my tears, I decide. All the tears I have cried, and all the ones I deserved to cry but have been unable to. The tears I have cried over autism, and my inability, despite everyone’s inclusive mentality, to celebrate the neurodiversity that is my son, the tears I have refused to cry because I will never see him catch a football, or go to college, or have a family, or balance his checkbook, the tears I have wept because his future is so uncertain.

  A mother and her three children pass me, linking arms in a chain. “Swim,” the mother yells, and her children, none looking at another, split off and obey like synchronized dancers, with fine, well-practiced strokes. I reach out to them but a wave swells and splits them away, and I realize there are only eight people in the world I can touch without permission and that my universe is very small and these are my tears coming back to haunt me. These are the tears I cried when my first husband and I divorced, turning our children into a statistic, products of a broken home, ferried back and forth between houses, skinny, forlorn, knock-kneed things wearing backpacks at the airport during holidays. These are the tears I cried, and the tears I absorbed, for making their footing unsure in this world. My tears for my parents’ own divorce, and the prophecy I seemed to have fulfilled as an oversensitive child who grew into an oversensitive adult. These are the tears for my losses, my compensations, the difficulty of the rebuild, over and over, the rebuilding of many broken things: my hearing, my eyesight, chronic pain, exhaustion, kidney stents and stones, hospitalizations and surgeries and heart monitors and tilt table tests. My stamina, my thyroid, my memory. My trust.