Steady, Love. —Jeffrey Kinsey
“I’ve g-got a big one here!”
Lacy has an imaginary monster by the tail. An alligator this time.
“C-come, come on! Help me!”
Lacy is shaking. A partial seizure. Her joints are fixed unnaturally—arms, wrists, fingers, jaw—a fucked up musculoskeletal rubik’s cube of terrible angles, colors mismatched.
“It’s too big!” Lacy is looking at me, hoping. “C-come help me get-get it!”
I won’t. I can’t do that. There is no monster in our bedroom. This is not a joke and I refuse to pretend. Amyotrophic Lateral Sclerosis and Guillain-Barre Syndrome. Both. They are what is in our bedroom, in my wife. ALS, onset two years previous. GBS, more great news only recently received. Lacy is twenty-seven and my heart is broken in lava lines, the sort of sadness that burns. Erupts and erodes.
“M-Milo, come on! This thing is huge!”
No. What Lacy is doing, pretending like this, mid-seizure, faking tragedy as charades, it’s sick. Lacy is twisted. I’m getting angry.
She gives up on me. Game over. The monster vanishes and the situation is real.
I stand, and with my obedient arms, my well-oiled nervous system, I hold Lacy as she shakes. “It’s ok.” That’s what I say. “It’s ok, baby.” That’s what I always say. “Lacy, it’s alright.” I’m a liar.
The seizure relents. Tremors come in ripples—the wake of something big having passed. My chest to Lacy’s back, I feel the storm leaving. Her breathing lets me know. Like the afterglow of a good cry, the stutter to each breath dissolves away.
My wife is a cyphered mood ring, a color chart difficult to intuit, but I’ve learned. In my arms, she is exhausted and scared, she is disappointed in me, again, angry at me for not pretending the alligator, for making her wrestle it alone, and she is sad and concerned for me because she understands my shoes, is taking on my hurt. Lacy is irrevocably empathetic and always in my head.
We feel these difficult things together, then we separate, get into bed, and turn the lights out.
My wife runs and sews in her dreams. In sleep, her body is still.
Starts with a ghost, a bad secret being passed around beneath muscles. The first signs don’t appear as a twitch, they aren’t movement at all. As Lacy put it, “More like ‘conspiracy to commit movement.’ Tiny whispers in my nerves I can’t so much feel as hear. It’s like my body is talking under its breath about me, coordinating some long-game, plotting to make me not work right. I just know something’s off.” And she was right.
Signs surfaced, symptoms evolved. Diagnosis. Staunch denial. And the life-test, grand existence tossing down a schoolyard dare: Bear this.
May 14th, three months after the whispers began, came her first true muscular malfunction, a prolonged contraction, and Lacy’s first public hurt. Mine as well.
Publix supermarket near our home, parking lot “Full. Every time. They really need to address this.” That’s what I worried about, the ease and convenience of my Publix parking.
Facon tempeh strips, $5. Free-range eggs, $6. What’s the world coming to?
Up the isles, and down. Lacy; people watching. Me; pricing, calculating our month.
A latter version of myself judged humanity for eating boxed and bagged items, for being overweight, disgusting, and undisciplined. I found time to hate most people. Such luxury to have those minutes, to own room in one’s computational analysis for the meaninglessness of strangers—invisible privilege at its most decadent. Life isn’t a string of days, I know now. That isn’t the graph. Life is an evolution of prioritization. It is a consolidation of perspective. World-view does not grow, it shrinks and becomes acute. You learn what to care about.
Produce, organic snacks, toilet paper for shit. Checkout line.
“Oops,” says Lacy, “forgot the milk.” Almond, of course. You’ll find no barbarians in the Lily household. I stay, let her go get it.
Approaching the register, I’m banistered by tabloids and candy, plastic women sleeping with rich men. I get busy hating people again.
Lacy’s return spins my head. A paper gallon of almond milk belly flops from her hand. It slaps the floor and bursts. Lacy’s homemade shoes, beautifully embroidered, are wet-white. Milk is gargling onto the floor. Everyone is looking. She gives an embarrassed smile, reaches for the carton before the mess worsens. Her hands refuse to listen. Her arms shake and fingers fix. Sliding past the human next in line, I move to help. The individual is upset that I’ve left my cart, perplexedly vexed on how to go on living in the face of such colossal inconvenience. Lacy sees me approach, waves me off.
This situation is a personal experiment, a paramount life-challenge. Lacy will get her fingers to work. She will lift this gallon. She tries and fails, tries and fails. Lowering to both knees, wet in the spilt milk, she attempts to grasp with forearms. The spectacle is comical and morose. People are laughing.
No more. We’re done here. I lift Lacy. She is scared and embarrassed, cries with frustration, with fear. I lead her from the store. I forget where we’ve parked.
Like a brave heart bested in a fight, Lacy makes to pull from me, go back and show that milk what’s what. She has never lost like this. She is shaking. I keep her.
“Where the fuck did we park!?”
I read fantasy novels and did people’s taxes, still do. Milo Lily, CPA. I loved the idea of creativity and lived with no art on my walls. I judged people for watching too much television and rarely went on walks. I was, and in many ways still am, the most subtle and corrosive variety of hypocrite—a bland palate of opposing shades canceling the color from my own life. An ongoing self-negation in grey-scale. I was a blank bore. And then…Lacy.
Five years before alligators in my and Lacy’s bedroom, necktie loose, unbuttoned sleeves rolled twice up each wrist, blazer shed, “I just don’t know.” I’m talking to my buddy, Paul. We have beers. We’re at Biscotti’s. Friday. Happy hour in Avondale.
“Don’t know what?” replies Paul. A question ripe with potential.
I sip my bourbon-barrel-aged stout. “About this year’s batch.” Analogous of recent calendar squares. “Little sour on the palate.”
Sips his, “Tasty to me.” Takes the bottom in one gulp. “Mel!” Paul motions to Melanie for another, a make-that-two acknowledgement of my glass, half-empty. Mel gives a suspect glance to our table. Third round of 14%ABV imperial stouts, and Milo plus Paul are approaching rare form. Mel leans the tap, pores and serves.
“Thanks, M,” smiles Paul.
“Very much unwelcome,” says Mel. We’re cut off. “Y’all be good please.” She means it.
My head is an underwater hum, a slurred siren song in a fishbowl. I’m staring at the room.
“This work is unattractive.” The hung art on Biscotti’s walls. “I don’t see the appeal.”
Paul is watching his phone, laughing at something. If I knew what, I would happily judge that too. In fact, think I might. “What are you looking at?”
Front entrance dingalinges the rustic bells above, door opens, room is lit. Enter Lacy.
My vision condenses to a contoured pinhole, light flooding in. It’s outline looks like this:
Dirty blonde hair pored behind ears, ponytailed in a casual mess. Makeup minimally invisible, dusted like one half hour’s worth of pollen on a Spring day windshield. Brown marble eyes—an amber to the green illusion preserved within. Nails, short and clean. All petite. All just right.
“Pickup order for Lacy,” and a voice to match.
Mel fumbles, attention stolen by Lacy’s dress. White sundress like a freshly ironed cloud hugs her small body—handmade, embroidery of unbelievable detail.
Paul giggles at his phone. Whatever it is, I’m sure it’s genuinely funny and worth laughing at.
“Love your dress.” Sincere compliment, a rarity from Mel.
“Thank you.” Lacy’s gratuity is sincere as well.
“Where’d you get it?”
“I make them.”
Mel is astounded. I’m still lost, becoming more so.
Mel is a future client, jots Lacy’s cell. Only pickup order at the register, Mel hands it over, says bye.
I knew Mel then, still know her now, close friends. And the biggest gift ever offered me by that relationship looked like a small styrofoam of potato salad left outside Lacy’s to-go bag. I hustle to the rescue.
Door dingalings, and exit Lacy.
Outside, St. Johns Ave, setting sun is bright, birds chirp.
“Think you forgot something,” I call. Me, you forgot me.
Lacy turns. Her eyes slide from my dumb smile to the little potato salad in my hand. She reads my intent, sees me clearly. I am accurately assessed. And for some reason, Lacy stays, she lets me talk.
I ask about the flowers on her dress.
“Cretaceous,” she explains, “the first flowers. The work’s interpretative.”
“Cool,” I say.
I tell her about bourbon-barrel stouts, the art of aging. She likes beer too. We talk about our favorite neighborhood park, our usual spots, wonder how we haven’t met. We lean against a stranger’s car, settle in. Music, good risotto, both only-children. On and on, talking, easy.
Half-drunk at the close of happy hour on a May afternoon, I am gifted a so-tiny glimpse into the interior of a human being made of colors unfamiliar to me. In Lacy, my grey mind is reflected back as vibrant, and for the first time, I want to be something else. Biggest miracle of my existence, Lacy allows me.
Paul got Mel to like him. Didn’t even know she was capable of that. Wedding bells. Dress made by Lacy, and shitty Mel looked like a goddamn angel. Beautiful event, Paul and Mel, we love them both.
Me and Lacy, cohabitation. Deep connection and perfect days. We eloped. Sorry, guys, not my call, I’m just happy to be there.
A small home in Riverside, block from the park, block from the river. Purchased. Brokered by Milo Lily CPA. A steal. Home office in the guest room.
Lacy leased a tiny storefront boutique in Avondale, Fine Lines, Lacy’s own space. A ten-minute walk to work that isn’t work.
Brick by brick, month by season, Lacy and I constructed our world. Good fortune and love smiled like aligned mirrors, fanning out into each other, seemingly endless. Everything went our way, and I loved her more each morning.
5 p.m. Fridays. My favorite minutes of the week. Fine Lines is closed for the day, and I use my key. Paul and Mel wait for us across the street, Biscotti’s happy hour, beers and potato salad.
Music is loud as I enter. This is how Lacy works. Cirrus by Bonobo is playing on repeat, thumping through the thin walls of Fine Lines. Her merchant neighbors don’t mind, they love Lacy. Love of Lacy is a universal imperative, a cosmological constant. I’ve yet to encounter an exception.
She doesn’t hear me, doesn’t realize I’m there. This is my time, my rare minutes. Invisible inside the sound of Lacy’s shop, I stand behind the Summer collection rack and watch through the open door of her work space.
Hand-feeding a snow leopard in the wild, night swimming beneath the cold burn of a borealis, a solar eclipse beheld from the tallest peak—none of them compare. There is absolutely nothing more magical and life-affirming than observing the object of your unconditional love fully immersed in what they are best at, turned up to ten and completely consumed by their passion. Lacy at work is the most-rare specimen of a human being fully realized. The witness of it is a profound privilege.
She plays her Singer like a piano, dancing while she sews, bobbing her head and peddling her foot to the percussion of the seem. Snipping threads with teeth, repositioning fabric, pumping the needle. Every object in the room like an extension of her. No balking, no hesitation. Her hands move with assured elegance, comprehensively aware of everything surrounding her. Including me.
“Ten minutes, ok!?” She doesn’t look up, gives a smile meant for me. “Lock the door! Tell them I’ll be there in just a minute!” She does look up, eyes meet mine, mouths the words, ‘I love you,’ and she’s gone again.
I love her too and lock the door. Across the street to meet our friends. Bourbon barrel-aged imperial stout, and this year’s batch is the best yet, by far.
A broken man will invent god.
Fate, Chance, Chaos—they are whimsical and flimsy things, children’s book authors, they can’t write this kind of tragedy. The only trash bag it will stuff itself into is that of a cruel god. True suffering is never internalized as random, even by the most irreligious. Spite is simply too powerful a motivator to pass up.
My symptoms evolved with Lacy’s. Shock, of course. Disbelief and denial—clinging to the illusion of being singular, faking ourselves as different from every previous victim who had worn and taken off our shoes, for good—pretending we could somehow beat this. “It’s ok, Lacy,” I would say. “We’ll figure this out.” Wishfulness as yeast for truth. False hope is fungal and bacterial.
My relationship to Lacy grew increasingly clinical. Medication on the minute, do this don’t do this, appointments. I’m a numbers man, it’s how my brain is configured. My entire personality is a chronological equation I fill in by the day. I compute myself and sleep on the outcome. I’m not like Lacy, I’m not creative. I’m abacurial and incapable of abstraction.
Our differences were now distance. Lacy dealt with her circumstances in ways I couldn’t understand, did not approve of. She insisted on walking straight through it, not changing a single step to her stride. Kept the same work schedule, continued to design and sell clothes. The tremors extended her production from days to weeks for a single piece. They made a pincushion of her fingertips, occasionally ruined fabric with blood.
“We need to consider not renewing the lease. Fine Lines, I mean.” I’m talking. Lacy is busy preparing dinner, chopping vegetables, making me nervous. “The numbers aren’t working.” I wait for acknowledgement. Lacy offers none. “We’re very close to not being ok lately.” Endless meanings.
Lacy’s eyeliner is crooked. She still insists on doing her makeup, even on bad days.
“You’d rather I just stay at home and get worse?” She sets the knife down, looks at me. “Be your patient, let you take care of me? That’s what you would like?”
“What I would like is for you to be reasonable.”
Lacy picks the knife back up, continues chopping, shaking. Unreasonable.
I take her wrist, meanly hold Lacy still. “I would like for you to please stop messing with knives,” I squeeze her wrist harder, force her to drop it, “and needles and scissors and riding you bike.” I release her. “I would like for you to please stop making me worry about you all day every single fucking day.” I’m reflexively cruel. I’m harsh. I apologize with my eyes and try to touch her.
She’s boiling. Our kitchen is an unkind and difficult space.
Exiting, “You don’t get to be like this,” she informs me. I can tell she is close to tears. Lacy is sensitive even in rage.
I stay, finish dinner, consider the cost of carrots and tilapia. A failed meditation.
I am an elementary math of fear and deeper fear. My wife is alone and everything I do is wrong. I don’t know how to be otherwise.
Fine Lines is closed. My home office is now Lacy’s studio—more a storage space, a sad parlor where Lacy goes to sit. I leave each morning. I travel to a cubical and do numbers for strangers. My resentment is a highly diversified portfolio:
—Health insurance companies; fuck them through the forehead, corkscrewed and violent.
—Lacy’s parents; where the hell are they?
—My boss; “Leave your personal chatter in the employee parking lot, Mr. Lily.”
—Our friends; everything is not normal, quit acting like it is.
—Myself; acutely unimpressive, everyday.
—And Lacy; she sold me a lemon, three good years for a lifetime of payments.
I hate myself for feeling anything but love for Lacy. Divisively ambivalent, back and forth it spins. The cycle is a slow tornado turning inside of our refinanced home.
Lacy wakes in good spirits, smiling in bed. I smile back. Saturday morning sun is an ethereal ooze through our Chantilly window curtain, lighting our room like a special effect. Particulates dance in the beam. No street noise. No business to tend.
Mornings like these are the pearls, sifted diamonds from the black coal burn of a noxious life. I lie still and breathe easy as Lacy scoots to me.
‘I love you.’ She doesn’t say it, but thinks it. Tiny pressure applied by my fingertips lets her know I heard, says ‘Ditto.’ This is how real lovers talk, in the quiet, without a word. It’s funny how intense tranquility can be. Irony at its very best. My basking is abbreviated.
“Girl’s night,” Lacy reminds me. She’s happy about it.
I sigh. Don’t mean to, but do, and the mood is broken.
“Birdies,” she says. A hipster dive bar in 5-Points. An overflowed shitbucket of a watering hole for trashcan raccoons, that’s my review.
I remember that I’d forgot. Paul and Mel at 7:30. Boy’s night too. Them at Birdies, us at home. Utterly unenthralled, all I can think of is how people with ALS shouldn’t be drinking, and how very successful Mel is at skirting that philosophy.
Lacy senses what there is to sense, tries to turn the tables. “I’m not supposed to say, but Mel told me Paul tracked down a few bottles of that really dark beer you like. The rare one that’s so hard to find.” She waits for me to be excited.
“Is that what you’re worried about, drinking?” I’m such an asshole.
Lacy’s turn to sigh. She’s out of bed and to the shower. Real lovers talk like this too.
Peace and joy are arguably more ephemeral than health.
7:43 They don’t knock before entering. I used to not mind.
“What up, what up.” Barrel-aged bomber in-hand, Paul’s showcasing it like a shopping channel item. I fake surprise—poor performance—and put it to chill.
Mel’s down the hall, hollering, “Hey, girl!” She has beer too. Pre-party. I’m already pissed.
Lacy and Mel stand giddy in the hallway entrance. “Us ladies are going to get ready.” Girl’s-night-smiles on both and I can see the tremors moving through Lacy. Her body is misbehaving. I don’t want her to go out.
Paul cracks an IPA, swigs it. “Y’all two vixens gonna go create some grounds for divorce this evening?” It’s not funny to me.
“You’ll just have to check our Instagrams,” says Mel, and the girls disappear.
Paul’s on the sofa, legs up. He’s plopped down that same way on this same couch in four different apartments of mine pre-Lacy. Paul’s been Paul to me since college.
“Maximum excitement in store tonight,” he tells me. “A thrill-seekers agenda.”
I settle down a bit, “And what might that consist of?”
A silent moment for drama, “Double-IPAs, imperial stouts, and watching skateboard videos on YouTube.” Former incarnations of Paul and myself used to skate together. “Have you seen what these kids can do these days? It’s seriously crazy.” Big sip and a Paul-sized smile. “Proposed agenda ratified?”
Skate videos and beer. Sounds nicely mind-numbing. It’s been a very long time since I spent an evening doing not shit with a good friend.
I grab a brew, “Ratified,” and cheers my buddy. I relax.
No lie, these little kids make the pros of my generation look like cavemen on logs. The skill level is stupidly impressive, and my beer tastes amazing. For thirty-five minutes I’m a kid again.
“How do we look?” Not rhetorical, Mel’s expecting compliments. Lacy exits our bedroom, joins Mel in the hallway. Her muscles are rigid and fixed, small tremors, her body is angular. The pair’s a very concerning sight and I’m no longer a kid. Speechless, I put the blame on Mel.
Paul sees things differently. “My goodness. A fine pair of man-eaters right there. I need a picture of this.” They pose. It’s posted. #sexpanthers #bloodthirsty #taken #sorryfellas
They are wearing pieces from Lacy’s new ‘collection.’ She is no longer able to sew and the product is a mess. The fabric is cut wrong, stitched wrong. Makeup provided this evening by Lacy as well. On both of their faces, around eyes and lips, bright colors are scribbled outside the lines. They look retarded and offensive, a pair of ALS clowns collecting dimes for charity. I can tell Lacy is waiting for me to say something. They step from the hallway.
“An absolute vision.” Paul snaps another shot. Mel poses. Lacy reads my face.
Mel collects her purse, Lacy’s clutch, makes to go. “Gentlemen,” she says, “enjoy your evening.” She gives her husband a wink, it reads, ‘I love you, don’t worry, I’ll see you later tonight.’ Mel opens the door and the situation becomes apparent. The two aren’t trying to leave, they’re attempting an escape. From me.
I stand. “Absolutely not.”
“Not what?” Aggressive tone, Mel is ready for a fight, always.
“You’re serious?” I know they are, I ask anyway. “You’re seriously about to go out like that?” My glare is a contemptuous scan, taking them in, serving them back to themselves as shameful.
Mel again, “Affirmative, captain, we are.” She salutes me.
A last look from Lacy, and they leave.
Quick to it, “Don’t,” says Paul, “They’ll be fine.”
I remind him of the sort of treatment cops tend to provide crazy-looking drunk girls shaking in the street at 2 a.m., what kind words hipster teenagers have on tap for face-painted, disheveled, adults spazing on their dance floor. For those looking for humiliation or harm, the world is quick to fill their order. I tell him that.
Paul listens and talks sense. Explains to me that Lacy needs a night like this, really needs it, that Mel loves her and is responsible and everything will be alright. He opens another IPA, encourages me to relax, enjoy myself, take it easy. He tells me it’s been a long time and that I deserve it, that I need it too.
I can’t enjoy myself. I spend the night getting drunk with Paul and trying to figure out why. Why am I this kind of man? Why can’t I be gentler? Easier on Lacy, on myself? My best friend and I talk. He is wise and kind, but doesn’t understand. I fall asleep the same person.
Eight in the morning. I wake on the couch. Lacy’s purse is by the door. I check, and there she is, in bed and breathing calmly. I need a shower. I get one.
Makeup a mess, dressed in rags, Lacy waits in bed. “We need to talk,” she tells me. “Let’s go get breakfast.” The invitation is somber.
“Do you plan on changing?” It’s an honest inquiry, I’m not trying to be rude.
“No. I don’t plan to.” Honest as well. Lacy is testing me, I know it. I also know that I will fail.
A ten-minute walk to Riverside Diner. We don’t talk. Other people do. They point at Lacy, say things. I can’t blame them.
One step to the next, and I can feel us approaching something. A life-divide, an impasse. I quietly consider my position. I buffer my fears by reminding them that Lacy can’t leave, that she needs me, that she is sick and has no where else to go. There is no consolation. My necessity to her leaves me feeling parasitic—an insulin pump on the hip of her life—a pacemaker of a wart on her heart—a suckerfish on a shark. I’m a tolerated need.
More thoughts, deep things, empty. We arrive.
‘Seat yourself.’ We do. Booth in the back. Some stares, some whispers. The scenery settles. Water, coffee.
Lacy is gathering her thoughts. Beyond our window is a red bird on a wire. I get lost in the sight of it for a moment, staring, pretending some secret, a special message stuffed inside the bird for me to find. The universe is trying to guide me, I just have to cypher it. The bird shits and flies off.
“This isn’t working.”
I know what Lacy means. I know everything she means. Still, “What isn’t working?”
My life goes quiet and the opposite of numb. My wife is fighting back tears, again. Is this really happening? I recalibrate. I take Mel into account. She would definitely let Lacy move in, she would care for her. Did they discuss that last night? I’m scared to death. Across the table from me, Lacy’s makeup is a florescent joke. She loses a tear down it. This moment is too surreal. My heart beats loudly.
“What are you saying?” I speak as if the dare of it will mute reply.
“Milo…” Lacy is hurting.
I think of my clients, pen in-hand, about to lay ink to paper on a loan that could destroy them. The overweight fear of one tiny word.
Lacy opens her mouth again, and she is going to say it. She is going to force the sound to fill in the blank. She is going to leave me. She is so strong.
“I c-c-c-…” She blinks. Ticks, hard tremors. The stress is too much and Lacy’s muscles begin to dance. All signs showing, this is going to be a violent episode. Lacy hits the table from under, spilling both of our waters, both coffees. Steaming wet, scared, hearts breaking, Lacy gives me a look. It’s bright and believes in me. Come with me, that’s what it says. And she’s up. Lacy stands, shaking, arms extended, one hand grasping the other wrist. The restaurant becomes an audience. I freeze.
“I’ve g-got a big one here!”
My brain-blood is a cocktail of emotion, Molotov and lit.
“Come-come-come on! Help me!”
My wife is waiting on the other side, begging me to jump.
“I c-can’t hold it much longer!”
There is nowhere I want to be without Lacy, and finally, I join her. Quick out of the booth, I’m behind her, chest to Lacy’s back, hands on hers. We’re together and she is laughing between clipped breaths. I am horrified and exhilarated. Lost and found in the love I have for this wild human.
“It’s a big one!” Lacy yells.
“Huge!” I scream.
And yes, it’s an absolute monster we’re dealing with. But me and Lacy, we’ve got this thing by the tail, and we aren’t about to let go.