Neevah
I’m still halfwayto Mars after we make love, and it’s hard to come back to earth, but I clean up, slip on Canon’s I’m Gonna Git You Sucka T-shirt and follow him downstairs. He grins over his shoulder and opens the door to the theater.
“So I had an idea,” he says, leading me down the steps.
“Always dangerous,” I laugh.
He sits down in the front row and pulls me onto his lap. “We have all this footage now of your journey with lupus.”
“Yeah,” I reply, smiling at the thought of my initial reticence to even have my picture taken while I was in the thick of the flare-up. Canon took so many photos of me that day in the studio after I re-watched The Magic Hour. Then he turned on his video camera, and I started talking. Everything that was happening inside came pouring out, a deluge of emotions and reflections. We haven’t looked back since, capturing all my thoughts and milestones along the way. It’s been cathartic, maybe as much for him as for me. Another thing we’ve bonded around.
“I thought about doing a documentary,” he says, caressing my hand.
I turn my head to peer at him in the dim light of the theater. “Really? Wow that could be . . .that could be amazing.”
“I’m glad you think so.” He stands, depositing me in the seat and walking to the back of the theater. “Because I want to show you a little something I’ve been working on.”
“Working on? In all your spare time?”
“We weren’t shooting,” he says, shrugging. “I had a little time on my hands. Actually once I started, I couldn’t stop.”
“Couldn’t stop what?”
“This.”
He dims the lights and the screen comes to life. My words come to life.
“I have lupus. It does not have me.”
I watch myself—that version of myself from a few months ago—onscreen, staring into the camera and saying the words that changed my life. Those words and that perspective, so much a part of me now, were new to me then. The fear still lingered in my eyes that day after I watched Remy’s final sunset. Hell, sometimes that fear returns, roaring back to taunt me, but sitting on the floor of Canon’s studio that day, I kept it at bay. For the first time, I held the reality of my disease in one hand and the necessity of my will to fight in the other. Not only to fight its effects on my body, but on my soul. On my very sense of self.
Canon slips back into the seat beside me. I don’t take my eyes from the screen because I’m riveted by this slice of my life he’s captured, but I take his hand and squeeze.
“Lupus will not go away,” the onscreen version of me continues. “For the rest of my days, it will roam my body, searching for weaknesses. It will watch my life, waiting for anything it can use to cause a flare—to do me harm.”
I was in the fight of my life the day Canon started documenting my epiphany, and I looked like it. A scaly rash crawling over much of my skin was revealed as I spoke to the camera wearing only my cami and underwear. My hair was a winter garden ravaged by the elements, my scalp exposed and picked clean in large patches. My face was fuller, unnaturally rounder. I don’t even look like myself onscreen, and yet that is the moment when I became most myself. More sure of who I was in my damaged skin than I had ever been when it was flawless.
“Lupus goes after my self-esteem,” I tell the camera. “It wants my confidence, and there have been times it won—when it stole those things simply by taking my hair and marking my skin—but I fought back.”
I swallow scorching emotion recalling this battle: the fatigue and aching joints, the soaring blood pressure, and the could-have-been-fatal close calls. The kidney transplant that gave me more than an organ—it restored my sister to me.
“I’m not in this fight alone,” I continue. “About five million people worldwide are living with lupus. Ninety percent of them women. The overwhelming majority of them women of color.”
The footage tracks my spells in the hospital. Seeing myself hooked up to the dialysis machine brings the uncertainty of those days rushing back—when I didn’t know if or when I would find a kidney. Quianna recorded the appointment when Terry found out she was my match—that she could give me her kidney. There is no fear or reluctance on her face. Only relief. Only love. And I’m moved anew by her sacrifice—by her willingness to give me so much even at a time when there was so little between us.
The camera follows me into surgery until the doors close and Canon retreats, slumping into a chair against a wall of the hospital waiting room. He turns the lens around on himself.
“I don’t want to tell you what I’m feeling now,” he says, his expression grim. “But I’ll try because Neevah wants me to. She wants to document this. There’s a part of me that resists because it reminds me of . . .”
A haunted look possesses his eyes. A twinge of guilt squeezes myheart because I know exactly what it brings to his mind—how he documented his mother’s last days.
“It’s not the same,” he says, almost like he’s trying to convince himself as much as he isthe invisible audience. “But it’s the same feeling. It’s like carrying priceless china that falls fromyour hands and shatters on the floor. Something so precious, broken beyond repair. Gone.When you’re given porcelain again, something you can’t even put a value to it means so much,you want to wrap it up and lock it away and protect it in case it falls. In case it shatters.”
He glances up from his clasped hands, allowing the lens’ scrutiny. “Every day since Ifound out Neevah has lupus, I’ve felt like she might shatter beyond repair. They wheeledher away a few minutes ago, and I know she’ll be fine and that this transplant is exactly what needs to happen, but it feels like everything could go wrong without warning because it hasbefore, and that’s my nightmare.”
Canon offers a hollow laugh, accompanied by half a grin. “The irony is that in the middleof all this shit, I’ve never been happier.”
He shrugs, the helpless movement at odds with the powerful shoulders making it. “I loveher and it feels like the strongest thing I’ve ever had. At the same time, it feels like the mostfragile.”