The Ballad of the Ugliest Lamp On the Face of the Earth

LaVieEnRose

That is, Justin said, coming out of our room with his tie halfway done, The ugliest lamp on the face of the earth.

Exactly what you want to hear after you just spent an hour putting the fucking thing together. What’s wrong with it?

It looks like you stole it from a hospital! Why does everything you pick out have to be so fucking...sterile? This is not the loft.

It’s also not a child’s playroom.

Oh my God. At least put it in the office upstairs so I don’t have to look at it.

No. It goes right there, I said, copying Jane’s favorite phrase to make him smile. He did, but only barely. I ran my hands up and down his arms. Nervous?

A little. We were just about to leave for the opening of the biggest show he’d had in quite a while. The whole thing felt a little off, partly because for the first time in about a year Justin actually liked the pieces he was showing, and we weren’t used to him really caring about the critics said because of that, and also because Evan and Emily and Gwen wouldn’t be there, because they were taking Jane to Emily’s parents’ place for Passover and Justin, obviously, had insisted they didn’t miss it on his behalf. Derek was coming, but Daph had to work, so all in all the whole thing felt...strange. Like it was a really big deal and also simultaneously like it wasn’t actually happening.

Hard part’s over, I said, taking his tie off and tossing it to the side despite his small noise of protest, and opening the top button of his shirt. Paintings are done. Now we show up and reap what you’ve sowed.

And fuck in the bathroom.

Yes, obviously that. I locked eyes with him for a moment, then brought his lips up to mine. He rested just the tips of his fingers on my waist and kissed me, and the whole thing felt delicate and beautiful.

We’d decided to take the car so we could make an easy escape once we got sick of the crowd. Plus—and not to give away too much of the plot—but with Justin it’s always a good idea to have an exit strategy in case things go south. He was quiet in the car, fiddling with the knob for the air conditioner and generally bugging the shit out of me, but by the time we got to the gallery in Brooklyn, about a forty-five minute drive, he’d calmed down a bit. He let out a breath. There’s Derek.

Go ahead in with him and find the interpreter. I’ll park.

By the time I got into the gallery, Justin was already making the rounds, watching the interpreter and smiling in all the right places. I kissed Derek’s cheek and downed a champagne flute.

I don't like this one, Derek said, gesturing towards one of the paintings.

Really? That's one of my favorites.

It's creepy.

It's him. See? I pointed out parts of the canvas. That's his heart, there's the lungs, feet...ears. His brain, here. It's him.

Yeah, if he were put through a blender.

I gave him a look.

Aaaand that's how it feels to be in his body, Derek put together. Got it. It's still creepy.

I looked around with a sigh. I should work the room, talk him up.

The burdens you bear.

It's hard to be the wife of a celebrity. You'll understand soon, when Daphne wins her Harper Avery or whatever the fuck.

Is that the thing from Grey's Anatomy? That's for surgeons.

That's your objection?

I circled the room and talked to some boring motherfuckers and said “Yes, I'm his husband,” about nine hundred times. Honestly, it's not that bad. It's always kind of fun to be in a room with people who recognize, or at least have the potential to recognize, what a fucking genius Justin is. He's spent so much of his life surrounded by people who wouldn't know their ass from a Kandinsky.

It is frustrating, though, that he didn't have this kind of success before he lost his hearing. Don't get me wrong, he does fine, but I wish he'd had a chance to experience this world when it was more accessible for him. All these doors should be open; he belongs here. But instead every reporter hesitates to approach him, every review harps on his Deafness even when what he's showing as nothing to do with it. The people here to see the collection were talking to me instead of him, and it wasn't because I was infinitely better dressed. Well, not just because, anyway.

It's fine, and he manages, but it just gets to me sometimes. That the world won't just let him be him. There's no goddamn reason for more people to not know sign language. There just isn't. Learn the fucking alphabet at least, something.

I came to his side eventually and put my hand under his elbow. Having fun? I asked him, and then held my hand out to the interpreter. Brian, nice to meet you.

You too.

I think people are responding well? he said. I don't know. I can never tell. They acted interested in what I had to say. See that guy?

Ugly fucker, isn't he.

He's from the New York Times and he's been looking at that piece for like fifteen minutes. I don't know if I should be hopeful or very concerned.

I kissed his cheek. Go for hopeful.

Okay.

Maybe Justin couldn't see it, but I could; Justin had these people wound around his little finger. I watched the critics gaze at his eyes and his ass and his brushwork and yeah, there's nothing in there not to love, and they knew it.

He's incandescent, my little bastard.

So everything was going great, but if you remember my little foreshadowing earlier then you're just sitting there waiting for the shit to hit the fan, so let's get on with it. About an hour and a half into the show I was just coming back from the bathroom and helping myself to another glass of champagne when there was a crash from the other end of the gallery, that hollow thump I know way too well, and Justin was on the floor.

No one knew whether to jump back or to put their hands on him, which meant everyone was just fucking in my way. Derek and I got to him at the same time, and we worked without pausing to talk—turning him on his side, cupping his head so it wouldn't hit against the ground, and shielding him from the onlookers as best we could. Someone said something about calling an ambulance, and I shouted, “No, he's fine. This happens. Just give him some room.”

It was a bad one. Justin's lips turned blue and his body twisted in on itself. He wet his pants, which I knew would be the part of doing this in public he'd hate the most, so I took my jacket off immediately and draped it over him like a blanket before anyone but Derek could see. It lasted for over two minutes. When it finally stopped and I heard him take in a rattling breath, I lowered my forehead down on to his chest and just stayed there for a second, wishing I'd seen it coming, wishing he'd never have to find out about this, wishing I'd kept him home and never let another soul get their eyes on him, not ever.

You, and this is a you-you, not some general you, do not understand how precious something is until it is broken in front of you. And I'm not even talking about Justin himself, not really. I mean this semblance of normal we'd managed to project to the public, the idea that epilepsy was just a cute quirk he sometimes painted about, the hope that my boy seizing on the floor would not be mentioned in the Arts and Leisure section of the New York Times.

You do not know what it feels like to have that stolen.

But right now I just needed to get Justin off the floor.

“Okay, sweetheart,” I said, very softly. “Okay, come on.”

Do you want to go to the hospital? Derek asked me. He looked calm, bless him.

I shook my head. I want to take him home. Can you stay with him while I go get the car? Try to get him up a little.

Of course, Derek said, and I left before I could overthink it. He'd be fine with Derek. He'd be safe.

I walked the two blocks to where I'd parked the car with my head down and my hands in my pockets, trying not to punch every goddamn storefront I passed, yell at every person, kick every fire hydrant.

This was supposed to be his night.

He'd been perfect.

He hadn't been drinking. He'd gotten enough sleep. He took his meds.

He went to his fucking prom with the person he liked just like everybody goddamn else.

He didn't do anything wrong.

By the time I got back to the car, Justin and Derek were on a bench outside the gallery, Derek's arm around Justin's shoulder, Justin's head in his hands. I pulled the car up and came over to him, squatted down in front of him. Hey, I said, but he didn't look at me. I lifted his chin with two fingers and waited for his eyes to settle on me. Hey. How are you?

He pulled in a slow breath, wheezing a little harder than I'd like.

I know. Come on. I helped him up, Derek on his other side, and we walked him slowly to the car. Are you coming? I asked Derek, sort of hoping he'd say no. I just didn't want anyone else around right now, even him.

He said, I think I should go back in there and see if I can smooth things over some. Try to redirect them back to the art.

Thank you. Thank you.

Call me in the morning and tell me how he is, okay?

I will.

Justin fell asleep pretty immediately, which I expected, and at first I turned the music up loud to try to stop myself from thinking, but then I get paranoid that I couldn't hear his breathing so I turned it off. The traffic on the BQE was awful, and it was almost an hour before we were even back in Queens. Fucking Brooklyn.

Justin startled awake when I turned off the car. I guess the rumbling was keeping him asleep. Gus used to love sleeping to the vacuum cleaner, I thought vaguely.

I touched his shoulder. Hey. You ready to go in?

He stared at me like he wasn't quite sure I was, then said, “Tell me what happened.”

Don't worry about that right now.

He turned and stared through the windshield, and I watched his profile and I could see it coming together in his head. Fuck this genius kid. Fuck fuck fuck.

“The gallery,” he said softly.

Let me take you inside and get you cleaned up.

He looked at me, his eyes wild and so clear. “Were we still at the gallery?”

Sometimes I really wish I knew how to lie to him. But I didn't even need to say anything here. He knew.

“Damn it, damn it, damn it,” he whispered, and the next thing I knew he was hitting the dashboard, kicking the car door, screaming in this way I think only Deaf people can. This scream that gets you right at the base of your stomach, that's so full of pain and exhaustion and honesty that we can't really dream of.

I tried to stop him at first—I didn't want him to hurt himself—but then I figured you know fucking what? If there was ever a time he gets to hurt himself hitting things if he wants to, here we are, and I just sat there fucking uselessly and watched him bloody his knuckles up and dent my car. He was this little hurricane of movement, and when he finally stopped thrashing and started sobbing I gathered him up and brought him inside. He let me, wrapping his legs around my waist and burying his face in my shoulder.

Evan wasn't home yet, and the house was dark and silent. I brought him to the bathroom and set him on the counter to take his clothes off, then bundled him up immediately in a robe when I saw how hard he was still shaking. I ran the shower hot and stripped and led him in with me, setting him carefully on the shower stool.

He was still crying, but in this quiet, absent way now, like he didn't even realize he was doing it. He just looked haunted, and I knew he was trying to remember what happened, trying to figure out exactly how bad this was. Working on some reality where somehow people didn't see.

He shouldn't be embarrassed about this. We both know that, so don't fucking start, okay? We can talk all day about how it's nothing to be ashamed of, but the fact of the matter is you don't want to fall and shake and turn blue and piss your pants at your art opening either, so shut the fuck. God knows what I'd be doing if it was me. I wouldn't be fucking having events if there was a risk that would happen to me, that's for goddamn sure. I probably wouldn't ever leave the house.

So he gets to have a breaking point. There has to at some point be a goddamn limit for what we demand he handle.

And there in the shower his bad leg gave out, and even though he was sitting it made him lose his grip on the ground and fall off the stool, and while I got down on the floor to check if he was okay he just put his face in his knees and...gave up, I don't know how else to describe it. He was just defeated. There was no anger anymore, just this bone-deep exhaustion and profound goddamn sadness, and I sat there wondering how much it's possible to take from one person and have there still be a person left.

I carried him out of the shower, wrapped him in a towel, and we just sat on the floor for a while, Justin in my arms, cradled between my chest and my tented knees, that thousand-yard stare stuck on his face.

“I wish he'd fucking killed me,” Justin said softly.

I know, baby, I said. I know.

**

Justin slept like a rock, thanks to the seizure, his head tucked into my collarbone. He had a nightmare around three AM, but I was able to coax him back to sleep after a little while, and besides that the night was thankfully uneventful. It's always a crapshoot when he has tonic clonic seizures whether it's going to be the first of a cluster, so it was a small favor that this one seemed to be a standalone. Turned out it, you know, wasn't, just to continue the tradition of spoiling the fun times ahead, but at least he had a break.

He was still asleep when I woke up. I checked him for injuries as well as I could without waking him up and then went to the kitchen to drown myself in coffee and make something for him to eat. Evan was at the counter looking at the paper, and when he looked up at me he was ghost-white.

“What the fuck happened last night?” he said.

“Shit. What does it say?”

“It says the artist collapsed at the show and something about it...somber...something. What does somber mean?”

Sad. I came over and looked at the review. ...added a somber reminder of the realities of life as a disabled young man. God, fuck me in the face. “Shit. Shiiiiiiit.”

“Is he okay??”

“Yeah.” I gave Evan a hug. Yeah, he's sleeping it off right now.

“He must be so—”

“He is.” I waved at the newspaper. “Do not let him see that.”

“They liked most of the pieces...”

“It doesn't matter right now.”

I gave Evan his meds and asked questions about Passover that I didn't pay attention to the answers to while I made coffee and waffles and listened for sounds of stirring in the bedroom. I didn't hear anything, but when I brought a tray of food in Justin was just waking up, sitting up slowly and stretching his knotted-up muscles.

I helped him sit up against some pillows and set the tray on his lap. Breakfast in bed, I said, settling down beside him.

It's not my birthday, he said, eyes downcast.

I gave him a look. You're sick.

“Yeah.” He prodded at the waffle with the tip of his fork. “Thanks.”

Yeah, anytime. I rested my head on the pillows. How are you feeling?

“You know in Wizard of Oz when the witch gets crushed by the house?”

Evocative.

“I try.”

He ate slowly, which was honestly more than I was expecting. I just lay there and watched him, how goddamn fucking beautiful he was with his puffy eyes and the morning sun in his hair. He's like a sculpture come to life.

How much do you remember? I asked, when I couldn't not anymore.

He shrugged. “Enough.”

Yeah. I played with his napkin. I need to call Derek. He was really worried about you.

“Shouldn't be. He knows better.”

This was a pretty bad one.

“If I was at home it would have been nothing,” he said, and...okay, it wouldn't have been nothing—we stop the day for tonic-clonic seizures, I'm not a monster—but I knew what he meant. We wouldn't be lying here awkwardly in bed together after, unsure of what to say to each other, dancing around the real crux of what happened.

I cleared my throat. I want you to call your therapist today, okay?

He rubbed his forehead. “Why.”

You said some dark shit last night, that's all.

“Okay.”

Do you still....feel like that? Light of day and all?

“I don't know,” he said. “I don't remember.” But I could tell he did.

So I just lay there for a while, tangling my legs in the comforter, watching him eat, waiting until he felt like he could talk. It's Justin. He always talks eventually. He has to talk about everything. It used to drive me crazy.

And he did, eventually. “You know that theory that disability is a construct, and that the issue is really that the world isn't accessible, not the problems with our individual bodies? And like...no one would be disabled if the world were just built with everyone in mind?”

The social model of disability. I read. And I referenced this earlier, you'll recall.

“Yeah.”

“I always liked that,” Justin said.

Me too.

“But here's the thing,” Justin said. “The world could be the safest, most accessible place you can imagine, and I would still be having seizures in the middle of my art openings.”

I watched him.

“So how exactly,” he said, his voice breaking. “Am I supposed to not hate myself a little for that?”

**

I know you want this to be the part of the story where I come up with something to say to make it all better, but the truth is, I can't. I can't fix this. I can't promise Justin it will never happen again, that he'll never have a seizure in public or in the bathtub or while he's driving or while he's giving a fucking blow job and all other kinds of situations that would really, really suck. I do not have that kind of power, and fuck Chris goddamn Hobbs for wielding that power like its own weapon. There is no punishment deep enough for him, and I have to reconcile that with not wishing that Justin was well.

Because we are disability-positive, as a family. It's something that's important to us, for Justin, but also for Evan and Jane and everybody. We look on the bright side. We call out ableism. We embrace what makes us different, makes us special, gives us culture and community.

But make no goddamn mistake about all that: it is hard sometimes.

It is hard, it is hard. Justin is in pain.

**

Justin slept most of the day, in bed or curled up on the couch around Evan, who held him like a baby bird. He was feeling better by the evening, and he got on his email to respond to the eight billion worried laypeople who were at the show or heard about the show or read the newspaper. It was all really fucking irritating just to witness, but Emily texted me, what a drama queen which made me smile, so there was that.

Things went south around nine at night. Evan was out at the clubs so it was just Justin and me, and he was sitting on the couch holding his head and looking as pale as I've ever seen him. I got him painkillers and put a cold washcloth on the back of his neck, but nothing was really helping. I'd spent half the day fucking crying, if I'm being honest with you, so I had a headache too, but...yeah. This was kind of a different thing. I was in the kitchen considering calling Daphne to tell me whether I needed to take him in, and I had my back turned for a fucking second, and of course then that's when there was another crash just like at the gallery and well, you know what was going on.

He'd tumbled off the couch and taken half of the side table with him, so I carefully moved him out of anything broken that could hurt him and then let him do his thing, stroking his hair until it was over. This one was a lot shorter, thankfully, and when it was over I just lay there next to him on the floor and pulled him into me, and we stayed like that for a while, staring up at the ceiling.

Until I started laughing, just a little at first, but then I couldn't stop.

Justin looked up at me, somewhere between confused and amused.

You broke the lamp, I said, and Justin covered his face with his hands and laughed until he cried.