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 my heart 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 is the invisible audience. “But it’s the same feeling. It’s like carrying priceless china that falls from your 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 I found out Neevah has lupus, I’ve felt like she might shatter beyond repair. They wheeled her 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 has before, and that’s my nightmare.”
Canon offers a hollow laugh, accompanied by half a grin. “The irony is that in the middle of all this shit, I’ve never been happier.”
He shrugs, the helpless movement at odds with the powerful shoulders making it. “I love her and it feels like the strongest thing I’ve ever had. At the same time, it feels like the most fragile.”
His words, so vulnerable and fear-tinged, steal my breath. As open as we are with each other, I’ve never heard this from him. Not this way. I was in surgery when he said these things, oblivious that he would confess these private moments, the intimacy of his struggle and doubts. It’s hard to believe the enigmatic man I met the night of my Broadway debut is this open, is sharing this much. Our love has transformed us both. I know it’s changed me, deepening my trust and giving me even more to live and fight for.
A photo comes onscreen, and I gasp. Literally gasp and cover my mouth, tears immediately stinging my eyes. It’s a photo of Terry and me. Right before they started her surgery, they wheeled me down to her room. We look high, our eyes glassy with the drugs they’ve given us, but also shining with a joy so strong it eclipses our fear. Our hair is tucked beneath the surgical caps. IVs pierce our arms, but we’re holding hands.