Whale Song For The Weary
In January, my legs change. I drive to my Midwestern, snow-dusted campus but cannot get out of the car. I imagine walking to the library, the four flights of stairs to our subcommittee’s meeting and know with certainty I will fall. My general practitioner is out of town for the month, so I drive again—this time to Urgent Care—while the muscles of my quads shake so violently my car bucks against the asphalt. When I am led to the back room, I collapse facedown on an unpapered table. I’m exhausted, I say, and it is so true that not a pinch of shame zips through me when I weep in front of this nurse, this stranger.
When is the last time you felt well? she asks.
I think of the previous semester, a Thursday when I canceled classes from my phone and slept in the parking lot for three hours. Or office hours during advising week when I draped a sign over my ribs that read, Wake me for advising, and napped on the sofa of a communal room, my backpack a hard-edged pillow. When I snapped to, I felt wild, disoriented in the dark, the motion lights long-off.
I don’t know, I tell her.
Oh, honey, she says, and I cry harder. Let’s run some tests.
I pump my fist to raise my puny veins, but I cannot look when the needle digs in. I never can look. Instead, I let my eyes fall shut and drift to the small island I’ve built in my imagination for such occasions, an island of little ecological sense: white sand chipped with glittering mica hugs the emerald throat of the Gulf of Mexico; an impossibly large, live oak towers in its center, weeps with Spanish moss; ferns burst like grassy fireworks along the perimeter; English bulldogs and puffins and wild horses run amok; at the end of a long wooden pier waits my army of baleen whales. I am never without my whales.
*
It is my father who first teaches me about whales.
Born in Crete, the southernmost Greek island slung low like a hammock across the Aegean, my father was bound by the laws of conscription. All male citizens between nineteen and forty-five years of age were required to serve the Army for nine months before joining the Air Force or Navy for an additional twelve. It is no surprise he chose the Merchant Navy. A man born of island feels best at sea.
He never speaks of the Greek Junta, the far-right military that imprisoned and tortured politicians, leftists, Marxists, anarchists, and freethinkers alike, but he was in service during their regime, the hatred a holdover of divisions sprung from World War II and the Greek Civil War. He never mentions war at all or what precisely he did for his government, but that he could have been trained in torture tracks with the abuse he doled out as a husband, a father.
Still, no one is wholly evil, and the moments he loves me are as difficult to understand as the ones in which he so violently doesn’t. From the time I am knee-high, he tells me the same story: to get to the States from Greece, he swam. He swam until his muscles felt alive with fire, pausing first to defeat a magnificent octopus before hitching a ride across the Atlantic on the spine of a humpback whale, his body comfortably rested between the dorsal fin and blowhole.
Show me, I say, and my father pulls the lever of our recliner to stretch his body long, knots his fingers behind his head. Together, we smile: silent, reverent.
*
In February, my vision doubles when I look to the left. If I close one eye, the world rights itself. My partner John runs down the list of stroke symptoms, and I don’t appear to have the other hallmarks: trouble speaking, lack of coordination, paralysis of any kind. Still, I go to the emergency room where I am seen almost immediately.
A nurse asks if I want a sheet to cover my breasts. I say no and she tacks EKG nodes to my chest, my stomach. When five more staff members join us, I yell, Welcome to the boob party. No one laughs, and I am certain it is because I am dying and those would be terrible last words.
Eventually, a doctor with soft eyes and hard bangs comes in and perches on the edge of my bed, cups her palm around my ankle.
Oh god, I say. A stroke?
She shakes her head. Have you ever been tested for MS? When I say no, she flattens her lips rod-straight. I’m referring you to neurology. I’m sorry. You need to prepare yourself.
Back home, my vision still doubled, I read articles on Multiple Sclerosis into the middle of night. John snores in the next room, and on the couch, I stare at the ceiling until exhaustion mercifully trumps fear, then slide into fifteen hours of darkness.
*
My family rents a house on Long Beach Island, New Jersey every summer of my childhood—three-bedroom duplexes that nearly a dozen aunts, uncles, and cousins fill and share. Over the next week or two, we boogie board and play paddleball, dig for mole crabs that tickle the palm, let sand castles grow surreal with dripped water. My mother applies coconutty coats of oil to her already bronzed skin; my aunt and grandmother trade paperbacks. But my father swims. He glides so far into the water that he is no longer human, a dark and bobbing dot in the sea, and lifeguards blow their whistles at him, insist he move in closer.
I never stop searching the horizon for breech and fluke.
One evening before dinner—in the extraordinary hour when the sun no longer sizzles but the light still blows bright—my father buries me neck-deep in sand. Against my feet, the bottom of the hole is cool, crunchy, the earth packed tightly against my legs. As it moves up my body, the sand dries, warm as a hug. When I wiggle my hidden fingers, I know I can free myself. I don’t mind being buried so long as I can escape, so long as I face the water.
After patting the sand around my neck, my father sits next to my head. The ground gives a little. Together we watch a commercial fishing boat loll toward the pier at the end of the island. After the air horn sounds, my father sighs.
I wish you hear them, he says. The whales. On a ship, you hear them all night.
I’ve never met this father, the one who drips with homesickness.
What’s it like?
In the dark is only you and the stars, he says. You and όλος ο κόσμος above, and when you think there is to be no more beauty, a song rises from the belly of the sea—a song so big your body is almost to burst. Can you imagine this?
I nod, breath held, but he doesn’t look at me, his eyes fixed on the ship grown small and indefinite with mist. He stands and brushes off his trunks with a nylon scrape. Come for dinner, yes?
When he walks away, I exhale; my tears plop soft and round on the sand.
*
It is still February. While I wait for neurology, my students watch me grow worse by the day. I don’t know how I’m still teaching three classes, running an internship with twenty people, but I am and it cannot last. One student says, You seem just like my father. I ask what his father has, and he frowns. Brain tumor.
Everyone who cares about me tells me to take medical leave.
My general practitioner Dr. Kay is back in the country. I hope her father is okay. He’s been ill and declining since I’ve known her.
Please. I can’t keep doing this, I say in her office, my heavy head pressed to the exam table. Can you sign off on FMLA paperwork while we get to the bottom of what is happening?
She gnaws her bottom lip while she looks over my bloodwork.
She says no. Not without a diagnosis.
But that’s why I’m here. For a diagnosis.
I can refer you to neurology, Dr. Kay says. But that’s about it. I’ve done all I can.
But. But you haven’t done anything. My throat tightens. You haven’t even checked me for the flu.
You just need to lose weight and exercise, Dr. Kay adds flatly.
I lift my head, voice hitched in my throat. These are symptoms, I say meekly. I want to fight but don’t have the strength.
She turns her back to me, a wall of white coat.
Wait. Did we just break up, I ask. A half-joke.
Of course not, she says.
One week later, she mails a certified letter terminating our relationship. My hands shake as I read it. Has she fired me because she doesn’t know what’s wrong?
*
My father does not go to the dentist. He never falls ill. I cannot remember him fevered or bronchial. I know him to be injured twice: once when he and his motorcycle are pulled from the undercarriage of a bus, and later when he is found dead of suicide in 2003.
But that can’t be true. In my memory, he is superhuman: a man able to swim miles and ride whales. I do not realize this is mere mythology until I am nearly forty.
As a child, I get tonsillitis twice a year. Another two times I am rushed to the hospital for fevers so high my body convulses. At twelve years old, I grow an ovarian cyst the size of a golf ball that ruptures on the way to surgery. Back in my sanitized recovery room, my father sits by my bed, strokes my slick forehead.
Do you want for anything? he asks, and in my delirium, I request a whale. My father belly laughs, and this is the last sound I hear before I again slink into sleep.
*
At February’s end, the neurologist runs tests: physical, blood, and radiological. I follow his fingertip without moving my head, and he notes my iris jumps when I look left. He holds my wrists, my ankles, asks me to push as hard as I can, and seems satisfied when I press against his force.
This is no one’s favorite. He produces a small pin. I need to be sure you are not numb. Tell me if you feel this. He works from my arms to feet, and each prick is like a dot of electricity. He laughs when he pokes my calves.
Wow. You need a shave, he says.
I haven’t had the energy to shower in a week. Where the hell am I, I think.
When I don’t laugh, he adds, Because you are a woman.
If I didn’t need his help so badly, I’d kick him in his neurological crotch. Instead, I force a half-smile and hate myself for it.
*
As a claustrophobic, I spend decades dreading an inevitable MRI. Twelve years ago a doctor ordered one for my knee, and I simply didn’t show. Now I watch videos on YouTube to prepare myself for the tunnel of immobility, a place from which I cannot escape.
After I strip and lock up my belongings, I am shown into a room of electrical thrum, my ears stuffed with plugs. I ask them not to fasten the cage around my face until my eyes are closed, and the moment I shut them, I am ready for the whale. As the tech slides my body into the tube from another room, I picture sliding down the tongue of a blue whale, eighteen feet of muscle that guides and holds me calm. A faraway voice says, This first one will last four minutes, and the construction sounds begin: metal on metal as the coils vibrate and collide. I let loose low and bassy hums, the quietest of songs, and before we are finished, I am asleep inside a whale, so exhausted that even in the face of my greatest fear, I cannot stay awake.
The MRI lights up with lesions, two worth noting on the superior left medulla oblongata and right posterior pons, as well as smaller spots deep in the subcortical white matter. I will google all of these words, but not before reading the doctor’s impression: given the patient’s age and gender, these raise concern for Multiple Sclerosis.
I ask my new doctor—the wife of a colleague—to refer me to Cleveland Clinic’s Mellen Center for MS.
*
Cleveland is a gray sky and drizzle in early March. The seven-hour drive takes me two days; I am too tired to go straight through. I don’t notice my Airbnb sits on the second floor when I rent it, and it is the first time I’ve encountered stairs in over a month. My legs shake a bit on the climb up, but when I descend to gather the rest of the stuff from my car, I am spastic; my legs quake violently, and I realize I’ve told no one—not even John—the address at which I’m staying. I sit on the landing and hope I am not found dead at the bottom of these steep, wooden slats.
Meanwhile, a virus has made its way out of Wuhan, China.
In the Mellen Center, I take stock: the wheelchairs, the walkers, the pinched faces of the fatigued and caregivers. It is odd, but I am hopeful. Hopeful that no matter what else my future holds, at least I will have some answers.
The neurological fellow and I discuss my symptoms while I slump in a chair: the crushing fatigue, the dull ache that radiates throughout my body, my unreliable legs, my vision. He studies the MRI images of my brain slowly.
This doesn’t look like typical MS, he says. The lesions usually look like fingers.
A ghost hand squeezing the skull.
But there is no “typical” MS. Let me run this by someone else.
He returns with his colleague, who glances at my MRI for perhaps twenty seconds before pointing to the lesions.
These parts of your brain are dead. You’ve had a stroke. Do you smoke? You need to quit today. We’ll give you aspirin and Atorvastatin.
But my cholesterol is fine, I say. And the hospital said I didn’t have a stroke.
They can’t know that. You’ve had a stroke. Imagine such certainty.
When his colleague is gone, the fellow says, I’m giving you an order for a lumbar puncture. We can’t rule out MS.
I leave the office in tears and stand in the rain, the brick of the Mellen Center rough against my back. I do not think I’ve had a stroke, but I am not a doctor. Once I’m soaked through, I climb into the back of a Lyft, which drops me at the Airbnb where I can barely climb back to the bed I will sleep in for the next fourteen hours.
It takes me four days to get home. A couple of hours behind the wheel, and I need a full night’s rest. By the time I am back in Indiana, my vision is back to normal, and a pandemic is declared in the States. Every upcoming doctor’s appointment I have is canceled. I am labeled non-emergent.
Horizontal and sleepy-eyed, I say to John, I feel like I’m dying while everyone watches.
*
I cannot hold our uncertain future and my illness at once. I am forced to live in the moment, to mantra myself with one day at a time as weeks pass elegiacally, and the world is on fire. I try to cradle the names—Breonna Taylor, Tina Marie Davis, Kwame Jones, George Floyd—and tweet about Black Lives Matter. I check the coronavirus numbers in my county daily, watch as they escalate, as no one wears a mask here in deep, deep, red country. The violence in Delhi, the earthquakes in Turkey, the refugees shoved back out to sea on broken boats by Greek authorities, protestors in the streets, more violence, corrupt police, a cowardly commander-in-chief. To look away from it feels irresponsible, privilege in action, so I don’t look away. I look until my body rings with agony, and then I continue to research what might be wrong with me. At night, I soak in the hottest bath I can stand and moan. I moan for the world, for our pain, for my heavy body and misfiring mind. I moan in the hope that my cry will reach someone who can hear me. I am a blue whale who sings in the night, in the abyss of southwest Indiana. My song can travel thousands of miles on the low waves of the sea in search of its community. I hope that out there someone will hear me.
*
Chronic illness is a lesson in how many strangers are comfortable telling you what you’ve got. To scratch that itch, here are the tests that have been run—many of them multiple times—the problems eliminated: vitamin deficiencies, anemia, platelet counts, and hormones. Metabolic and thyroid panels are fine. I test negative for mononucleosis, Lyme disease, lupus, Sjongren’s syndrome, rheumatoid arthritis, Addison’s disease, celiac, and diabetes. My optic nerves are tip-top, an echocardiogram comes back clean, my thyroid free of nodules. The iodine of a CTA scan rushes warm through my veins, makes me feel as though I’ve peed myself though, mercifully, I have not. Results: normal. Scans of my cervical and thoracic spine show no lesions on an MRI. A spinal tap comes back clean. I eat little dairy, no meat, no gluten, nothing fried or processed. Whatever sugar I take in comes from fruit. I have the house remediated for mold just in case.
Though my initial Lyme tests come back negative, a tick-illness specialist sends my blood to a lab in California that runs me nearly $2000 out of pocket. She tells me I have Lyme, Bartonella, Rocky Mountain Spotted Fever, and Babesia (a malaria-like tick illness). I will not find articles about false positives of the lab she’s used for months, so for a moment, it feels like an answer. The answer. She prescribes supplements, antibiotics, and antimalarials. For six months, I take nearly twenty-five pills a day. I take so many pills my tongue turns black, and while I am horrified to look at it, it seems the least of my problems. The real problem is I am getting worse, and after six months, whatever infection I may have had is surely zapped.
*
Rest is terrifically dull, and most days, I do not have the energy to read or write, so between naps, I watch every British crime show and cozy mystery ever made and listen to audiobooks about cephalopods and cetaceans. Wide stretches of time slip by with my eyes closed, my mind on whales. I spend an entire week imagining the belly button of a blue whale, the largest animal that has ever existed. Another week slides by while I contemplate the size of its eye in comparison to its body. From Nick Pyeson’s book Spying on Whales, I learn about paleogeology and bone beds, that whales once emerged from the ocean and walked on land before heading back out to sea. I could stand upright in the heart of a blue whale, and I picture doing so, the slow thunk of it rattling my body.
I begin to wonder if whales get chronically ill. I am certain they do given the pollutants they are exposed to. Environmental illness. But more than that, I wonder how they feel stress—if they feel emotional pain cling to their blubber, to their bones. Perhaps this is why whale songs sound so mournful to human ears and fill us with nostos, homesickness, an awe we can’t quite name. A homesickness for a home we’ve never known.
*
In August, I develop what my doctor calls a significant tremor. I take video of my quaking thumb and text it to friends. HOLY SHIT, they write back. SCARY! This happened in April as well, but it only lasted a few hours. As I type these words, I have had the tremor for five weeks.
I ask my doctor to refer me to a Movement Disorder Specialist in Neurology at Johns Hopkins. I need reliability, something to hinge my hope on. Before August’s end, Hopkins has all of the documents they need: thirty-eight pages of bloodwork, radiological imaging, doctor’s’ notes, my insurance info, and intake papers, the works.
My doctor gently suggests I prepare myself for a diagnosis of early-onset Parkinson’s. We have to rule it out or in, she says.
It is now nearly the end of September, and just yesterday Hopkins told me they cannot find the medical documents I confirmed they had weeks ago. At this rate, I will be lucky if I’m seen before the New Year.
Once a week, I cry so hard I choke.
*
Chronic illness is a whale. We know little about both. Blue whales spend the bulk of their lives at depths humans cannot explore, but there are answers to be uncovered. Where do they breed? Migrate? How many are left? Why don’t female whales sing? So many questions and answers. To get those, scientists must continue to push and dig and find funding for research. The same is needed for chronic illness—especially for women. The 21st-century catchall is Chronic Fatigue Syndrome (CFS), a disorder women are diagnosed with three times more frequently than men (there is not yet enough non-binary research). There are many academic publications about CFS, and while speculation about it having viral origins exists, most medical facilities readily admit that its cause is unknown. Could be a virus. Or chronic stress. Or all in your head. Or a combination of factors. There is no medication to treat it directly, and there is no cure.
In 2019, scientists at the New England Aquarium in Boston published a paper on chronic illness in whales by studying and measuring the stress hormones left behind on baleen plates. While I lack a push-broom mouth for filter-feeding, my teeth show the wreckage of the neglect and trauma I endured as a child. My CPTSD is well medicated, but still: so much stress, a lifetime of fighting. Research clearly shows that children who grow up with chronic abuse are more likely to develop chronic health problems as adults. After years of reading about trauma, I have finally aged into the statistic I’ve been destined for since childhood.
*
I want badly to wrap this ending in a spiraling strand of bows, to confess that my doctors have, indeed, figured out what is wrong. And something is so very wrong. It is my body, and I know it well—even this strange new body that shakes, this weird new brain that forgets daily what it watched the night before. John recaps plot lines for me every day; a night’s sleep erases all. He reassures me my mind is holding onto only what it needs, that British detectives are not in service to my health.
If John is correct—and he sometimes is—what I need are whales. I need the half-darkness of my midday sleep mask and the wonderment I spend hours floating in. Unable to face all that I don’t know—unable to think too long about my failing body—I need to lose myself in the float.
Everyone asks how they can help, and until now—unless they are a doctor—I’ve had no good answer, but here it is: picture me, a woman in her early forties, off-balance and twitchy, easy as a calf beneath the twenty-five-foot flipper of a blue whale. This woman has gills, and her legs have fused into a monofin, her feet angled in the V of a fluke. Beneath her chin, black-and-white circles of her first barnacles. Stand on the coast of Monterey Bay and wait for us. We are coming. Watch as we glide through the Pacific, as we lunge for krill and fight the drag caused by our mouthfuls of ocean. Watch us barrel roll. Watch us expel everything we don’t wish to swallow in a tall, aquatic spate. Do you see us? Good. Now watch as we sink deeper, deeper. Don’t look away until you are certain that together, we have disappeared.
Lisa Nikolidakis’ work has appeared in The Best American Essays, Los Angeles Review, New Orleans Review, Hunger Mountain, McSweeney’s Internet Tendency, Salt Hill, The Rumpus, Nimrod, Gulf Coast Online, and elsewhere. Her memoir, No One Crosses the Wolf, will be released in September 2022 by Little A. She teaches creative writing in the Midwest.