“I’m sure it has been,” she says, her placating tone grating on my last nerve. It’s a dismissal, a pat on the head for my little job while she deals with more important things.
“With everything going on, I just don’t have the mental space or the free time for an interview right now,” I say, the apology tasting like ash in my mouth. “I promise I’ll email her as soon as I get home and explain.”
To my surprise, she doesn’t argue. “Fine, fine.” A tiny, foolish spark of hope ignites in my chest. Maybe she’ll drop it. Maybe she’ll ask how school is going, how the students are settling in. Maybe, for once, she’ll just be a mom.
The hope dies a quick, brutal death. “On another note,” she continues, her voice brightening with a new, terrifyingenthusiasm, “I’ve been approached to paint a few pieces for a charity auction. For the hospital.”
I know exactly which hospital she means. The one where her internist works, the one who finally, after years of misdiagnoses and medical gaslighting, gave my illness a name.
“That’s great, Mom,” I say, my voice flat, robotic.
“It is! It’s a huge honor. And I want the pieces to focus on you.”
The car feels like it’s shrinking around me, the air growing thin. “On me? What do you mean?”
“Yes! It will be so powerful. A series on the face of lupus. And I have the perfect centerpiece. I was looking through some old photos, and I found the one I took of you that day we got the diagnosis. Remember? You were sitting on the edge of the examining table, the light from the window was just perfect, and you had that beautiful, tragic look on your face. The butterfly rash was so pronounced. It will make a stunning, heart-wrenching painting.”
My blood runs cold. I remember that day in excruciating detail. I remember the relentless hum of the fluorescent lights, the sterile smell of antiseptic, the crinkle of the cheap paper on the exam table beneath my trembling thighs. I remember the way my joints ached with a fire I couldn’t extinguish, an agony that made the simple act of sitting upright a monumental effort. I remember the exhaustion that felt bone-deep, the puffiness in my face that made me unrecognizable to myself in the mirror, the red, angry rash spread across my cheeks like a brand. I remember feeling stripped bare, vulnerable, and utterly, completely terrified. And she took a picture. In that moment of pure devastation, her first instinct was to frame the shot.
The thought of that moment, my absolute worst, being captured and rendered in oil paints for a room full of wealthy strangers to gaze at, to pity, to bid on, makes me physically ill.This is my living nightmare. I hate being the center of attention; it’s one of the main reasons I fled the art world my parents tried so desperately to push me into. I like the quiet act of creation, not the loud performance of explaining it. I learned that the hard way at my first and only undergrad exhibition, wilting under the barrage of questions about my work, my process, mymeaning. My mother knows this. And yet, once again, she has assumed, has volunteered me for a role I never auditioned for. She has pushed me onto the advocacy stage when all I want is to be left alone in the wings.
I take a deep, shuddering breath, trying to keep my voice even. “Mom. I… I’m not comfortable with that. At all. I don’t want a painting of me at my sickest hanging in an auction for everyone to see. That’s a really private and painful memory. That’s not who I am anymore.”
She completely bulldozes past my concerns, as I knew she would. “Oh, don’t be so dramatic, Maya. It’s not about who you are now, it’s about the journey. Think of the bigger picture! No pun intended. This would benefit patients just like you! It would raise awareness. It would give people hope to see that you can get through the worst of it.” Her voice takes on a sharp, righteous edge. “And frankly, if you’re not going to do the interview, the least you can do is this. You’re really falling behind on your advocacy work.”
My advocacy work. As if I ever signed up for it. As if getting sick was a career choice I made. The carefully constructed calm I’ve been clinging to all night shatters into a million pieces.
“I never signed up to be an advocate, Mom,” I say, my voice cold and hard. “I’m a teacher. That’s my job. My illness is not my career. I want my private life to be just that. Private.”
“Maya, you’re not being reasonable. You’re being selfish?—”
“No,” I say, cutting her off, my voice rising. “I’m done being reasonable. I’m done being your poster child.” I stab the redicon on the screen, ending the call. The silence that follows is deafening, ringing in my ears. My hands are shaking so badly I can barely keep them on the wheel.
I pull over to the side of the road, the gravel crunching under my tires. I kill the engine and the headlights, plunging myself into the thick, coastal darkness. I fumble for my phone, my fingers clumsy as I pull up my brother Hugh’s contact.
Me:Mom’s lost her mind. She wants to paint a portrait of me from the day I was diagnosed and sell it at a charity auction.
His reply comes almost instantly.
Hugh:Holy shit. Are you serious? She actually has a photo from that day?
Me:Apparently. She called it ‘beautiful and tragic.’ I think I’m going to be sick.
Hugh:I’m on it. I’ll call her. Don’t worry. I won’t let it happen. That’s a complete violation.
A wave of gratitude so intense it makes my eyes well up washes over me.
Me:Thank you. I can’t deal with her right now.
Hugh:You shouldn’t have to. She’s unbelievable. I’ll handle it.
I lean my head against the cool glass of the window, taking a deep, ragged breath. He’s the only one who gets it. The only truly normal person in our entire, messed-up family. And right now, that feels like the only thing keeping me sane.
I unlock my apartment door, the anger from the phone call with my mother still a hot, buzzing thing under my skin. Usually our conversations leave me feeling drained and hollow, the creativepart of my brain shutting down completely. But tonight is different. There’s a strange, restless energy thrumming through my veins. The rest of the drive home, my index finger was moving unconsciously against the rough denim of my jeans, tracing the curve of a jaw, the bridge of a nose, the shape of a mouth. It’s a nervous habit, a way to self-soothe, but tonight it feels like something more.
Instead of collapsing onto the couch and doomscrolling, I walk straight to the hall closet and pull out my old art portfolio. The smell of charcoal and graphite is familiar and comforting. I open my sketchpad on the kitchen table, the clean, white paper a stark contrast to the turmoil in my head. As I select a piece of charcoal, the face I’ve been tracing in my mind’s eye comes into focus. It’s not an abstract collection of features. It’s Zachary.
A part of me wants to slam the sketchbook shut, to put it all away and focus on something else. Anything else. This feels dangerous, like indulging a craving I should be starving. But the impulse to draw is too strong to ignore. My hand starts moving, the charcoal whispering against the paper. I’m not just drawing a face; I’m recreating a memory. I sketch the fan of creases around his eyes that appear when he smiles, the deep laugh lines that bracket his mouth. I spend a long time on his plump lower lip, remembering the way it moves when he’s explaining something with quiet passion. Remembering what kissing those lips feels like.
