I’m still halfway to 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 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.
And I see it.
For maybe the first time I really see the resemblance, the sameness nature stamped into our DNA. The very sameness that saved my life.
I don’t even try to check the tears as they skate over my cheeks and into the corners of my mouth. I lay my head on Canon’s shoulder, turning into him and letting the quiet sobs shake me. He cups my head, kisses my hair and strokes the ink scrawled on my thumb, the message from a play that has remained with me since I was eighteen years old, Our Town.
Do any human beings ever realize life while they live it? Every, every minute?
Saints and poets maybe.
And that’s what I’d like to call this documentary when it’s done. It’s the lesson of seizing this existence with both hands; of not letting anything stand in your way; of living with as few regrets as possible. Of loving even when it might hurt because loss is as much a part of life as what we gain. The beautiful man sitting beside me in this darkened theater is proof of that. This poignant art testifies that he’s taken as much care telling my story as he took telling Remy’s. It’s a labor of love.
“I thought maybe once we finish it,” Canon says after I’ve cried all my tears. “We could screen it at Cannes next year.”
I lift my head to stare at him, dumbfounded by the idea. Delighted.
“Oh, my God!” I laugh, swiping at my wet cheeks. “That would be . . .seriously?”
“And we could take the whole family. Get your mom on somebody’s private jet. Take Terry and Quianna.” He smirks. “Even Brandon could come.”
“That would be . . .wow.”
“I know we said you’d start with Paris, but maybe we can do Cannes first.”
Cannes, with its curving coastline, the beaches sanded like grains of sugar, the azure waters and boulevards dotted with palm trees, the palatial villas.
I want to see the world.
Dessi’s words, delivered to Tilda with the fearlessness of youth, drift back to my mind on a warm Mediterranean breeze.
How will that view, the French Riviera, have changed since she stood there, surveying its lush landscape, Cal at her side, her first love behind her. Did she ever regret leaving Harlem? From what we gathered, she never returned. Did she ever wonder how different her life would have been had she never struck out in search of stardom? Or did she ever sit on her little porch in Alabama after she returned home to take care of her dying mother, wondering how vast her life, her legacy could have grown had she stayed in Europe? What bends her road could have taken had she remained, brushing up against the greatness of luminaries like Bud Powell, Thelonious Monk, Miles Davis? They all fled racism in America and sought their fortunes, their fame in Paris, in a country and among a people who appreciated their genius before looking at their skin. Despite her modest ending, I don’t think Dessi wallowed in could-have-beens.
Canon once asked if I ever regretted doing the movie, since the stress of it probably caused the flare-up that sent me into a darker phase of this disease. I understood his question and the guilt behind it, but I reassured him immediately that I didn’t. Have never. I can’t live like that. Life is indiscriminately seasoned, usually not sweet without some bitter. Usually not sun without some rain. I’m in a support group, and one lady’s lupus was triggered while she carried her first child. Does she regret her baby, a miracle who brings her joy because her body paid the toll? She says unequivocally no. And I can’t resent the movie that gave me Canon, the love of my life. Can’t regret the role that gave me Dessi, because even once the movie wraps, I will carry a part of her always.
As crazy as it sounds, I think she carried me. And Canon and Monk and Verity and all the storytellers, musicians, and artists who benefit from the path she forged. From the way she and so many others made for us during untenable circumstances, in adversity and against impossible odds. She carried me and I carry her, and somehow, we are knitted together in a way that reaches across generations, across years, binding our hearts.
“It’s nowhere near done, yet,” Canon says, a rare uncertainty in my confident man’s voice. “I just started putting some stuff together, but we can look at it. You like it so far?”
“I love it so far.”
I feel his heart in the look he gives me. Ours is a love so much richer and deeper than anything I could have dreamt or imagined, girded with trust and burning with passion. That forever kind of love that doesn’t waver when times get tough and things go bad. That come what may kind of love, and every time he looks at me, I see it.
“I love it when you look at me like that,” I whisper.
“How do I look at you?” He pulls me to him, fitting our bodies together, locking in our love.
This disease could kill me, but it hasn’t, and I’ll do everything every day to make sure I do what Remy did—live every second with the urgency of time slipping away, and savor every moment, making this life taste like eternity. I can’t always put the depth of our love into words, but in this moment, I know exactly how to describe it.
“You look at me the way your mom looked at sunsets.”
If possible, the emotion in his eyes deepens. His arms around me tighten, like he’s found something precious he’ll never let go.
“Mama always said waiting for sunsets was like waiting for a miracle you knew would come,” he says, his voice graveled with the emotion in his eyes. “How happy she must be to know I finally found mine.”
