The Encore

by Charity Tillemann-Dick

  The audience erupts in a huge ovation and I exit stage right. As I collapse into my wheelchair, Glorianna helps me place my cannula as Zen lowers my footrests. I did everything I could not to cry onstage, but now tears stream down my face. I think of Éva’s pronouncement, uttered so long ago—nearly ten years ago. I know true love. I know death. I know sickness. I know work. As I go on for the final curtain call, Jessye Norman takes my hand. “That was wondrous. Miraculous. Spectacular!” Sandwiched between Ms. Norman and Patti LaBelle, I am among the Great artists whose ranks I’ve always aspired to.

  On the second anniversary of my first lung transplant—two days after my Lincoln Center debut—I’m back in Cleveland for another performance and activated on the transplant waitlist. It feels like filing for divorce on a wedding anniversary; there’s a poetic unkindness about it.

  But there’s no time to dwell on it. My wedding is less than a week away. “My” wedding. I seem to have less to do with the event by the day. Marsha has picked the wedding planner, the caterer, and the venue. Even relatively small things like the colors or the favors inspire the Dorons’ (Yoni included) full-throttled opposition.

  “Charity, the rabbi sent over a sample for the seven blessings.” Yoni begins to read from the adaptation of Joel Rosenberg’s text as we sit together in Cleveland. It’s lovely, filled with allegories of the heavens and of nature. I love 98 percent of it. But every other sentence talks about hummus.

  “Babe,” I say, when he’s finished. “It’s so beautiful. But could we say ‘earth’ instead of ‘hummus’? I mean, I love hummus, but on chips. Not my wedding vows.”

  I’ve unwittingly unleashed a beast who’s been snarling in his cage for months. “Why do you have to change EVERYTHING?!” Yoni screams. “Is nothing sacred?! You just have to get everything you want!” He’s still screaming.

  “Yoni! I am getting nothing I want with this wedding! You know that!” I respond, totally bewildered by his vociferousness.

  “You said this could be my wedding! That’s what we agreed to! I am supposed to plan this wedding! This is supposed to be my event! But, NO. You insist on having your colors. You tell my family to wear your stupid colors. And this?! What, are you ashamed that we’re Jews? That I’m Israeli?!”

  I’m totally baffled. Yoni isn’t just being mean. He’s not making any sense. I don’t bring up my family’s deaths in Auschwitz’s gas chambers or on the banks of the Danube. This argument is so utterly unworthy of them. “Yoni!” I can’t keep up with his rage. “You’re saying my desire not to use the word ‘hummus’ repeatedly in my wedding vows makes me a self-hating Jew?”

  “You certainly wouldn’t be the first,” Yoni spits.

  What has this monster done with my Yoni? I shut myself in the bathroom and splash cold water over my face. I decide the best thing to do is go to sleep. I brush my teeth, get into my bed, and pull my covers over my face.

  “You promised never to go to sleep angry,” he says to me, sitting on the side of my bed.

  Oxygen hisses into my nose and I pause for a moment.

  “You just equated my desire to change the word ‘hummus’—commonly known as a type of bean dip—to the word ‘earth’ in my wedding vows with a deep, latent anti-Semitism. Anti-Semitism killed most of my mother’s family. I’m going to bed angry.”

  He gets up and slinks to his bed.

  “And, Yoni?” I say. I hear him perk up, perhaps hopeful for some reconciliation. “You’ll be lucky if I go through with this wedding at all . . . And there better be no mention of bean dip in my vows.”

  The next morning, I return to the Cleveland Clinic for follow-up treatment. As we drive from the hotel to the hospital, the skin on my forehead sticks to the passenger-side window of the car. How, after all of this, am I still planning to marry that? As I scoot from the car into a wheelchair, I remember how much we’ve done together. The things we’ve experienced, learned, and grown from as a couple. But if this is how he plans a wedding, how can I trust him to face real challenges alongside me?

  “Can you bring my paints?” I ask him before we go up to my room.

  “Are you really going to use your paints in the hospital?” he protests.

  “Yoni, I want my paints. You will bring them for me because you know I can’t lift them myself.”

  He takes me and my things upstairs where the admitting nurse directs me to my room. It’s in a corner, surrounded by windows and filled with light. I can look out onto Lake Erie and downtown Cleveland. Yoni kisses my head, reminding me that Mom arrives later that day and promising to bring my wedding dress to his sister’s house. Then he says goodbye.

  “I’m Danielle and—well, don’t you just look like happiness and sunshine?” croons the nurse’s assistant as I sit on the edge of the bed, the sun’s rays warming my face.

  I laugh, thinking about the previous eighteen hours. “It’s such a wonderful room!” I say.

  “Right?” Danielle responds. “Usually, there’s someone real important in this room, but it was the only empty bed today so you got it!” she says, smiling. “You know, I heard a Saudi Arabian princess stayed here a few years ago.”

  Over the next four days, doctors conduct more tests than I’d like to count. But I paint and paint and paint in that light. I end up with eighteen panels—all in my wedding colors. Between tests I see friends: my old doctors and nurses, and new ones I’ve met on the floor; Huda and her father are still next door; Jeanne drops in occasionally; Nancy and John, my old neighbors from the ICU, come to visit; Joela stops by after concerts. I loathe the tests and the pain, but I value being with all these lovely people. In a strange way, the Cleveland Clinic has started to feel like home.

  While I’m here, I pray. A lot. I realize that Yoni is just nervous. His behaviors are inexcusable, but they come from a place of powerlessness. Yoni was there for me when I was mourning the deaths of my grandfather and father. He was there through my first transplant and now, as I face another transplant and the very real possibility of death, he still wants to marry me. He hasn’t flinched. On the contrary. From teetotaling to abstinence to my death, his reactions to our lives’ biggest challenges are unerringly optimistic—an attitude I’ve only ever expected from myself and Mom. But Yoni naturally sees the good in almost any bad situation. He only really messes up when the stakes are low—like wedding colors, difficult conversations with parents, and a stubborn determination to win arguments regardless of whether he is right. It is possible that I’ve found the only man on earth who has both a more positive outlook and a more stubborn disposition than my own. But I know I’d much sooner be annoyed by Yoni than be without him. Despite his terrible behavior, I can’t imagine facing the future—however much of it I have left—without him by my side. I dread the wedding, but at least things between us can only improve afterward. For that, I’m grateful.

  I arrive at my wedding venue in upstate New York and walk into a nightmare.

  Freezing rain coats the sidewalks in sleet as we trudge up to the door. The venue itself is beautiful: a nineteenth-century hall with a domed steeple—reminiscent of early Mormon temples—but walking through the doors, it’s colder inside than it is outside. And it’s cold outside. From the linens to the woodwork, it appears the building hasn’t been updated since its construction. But at least it’s charming, I try to reassure myself. Slowly ascending the antique staircase with my oxygen in tow, I’m hopeful it might be warmer upstairs in the main hall. But as I turn the corner, a lump forms in my throat.

  Weeks ago, Marsha’s planner demanded a series of “vision boards” from me. I had filled them with pictures of quivering gray-and-yellow aspens and sunflower fields. Somehow the planner has translated that into brown, orange, and red garlands of plastic leaves. Instead of luminarias hanging from posts, stuffed scarecrows leer smilingly from every horizontal surface, with the odd sugar pumpkin thrown in for good measure. It looks like elderly church ladies have commandeered my wedding venue for an ill-conceived Halloween cra
ft night. As the woman who was supposed to be my wedding planner explains that the building does not, in fact, have heat, I’m struck speechless.

  At this point, my youngest sister, Glorianna, steps up. The only introvert in the entire Tillemann-Dick family, she typically shies away from conflict. People—especially those not related to her—exhaust her. But here, her sense of loyalty, need for justice, and excellent taste demand action. This will not be tolerated.

  “Charity, your colors were yellow, khaki, silver, and white, yes?” she asks.

  I nod my head.

  “So, my question is,” she says, turning to the wedding planner, “what is this mess?”

  “Well—I don’t know—I thought she’d like it . . .” responds the planner.

  “And did you ever speak with Charity or Yoni or Marsha about making scarecrows and pie pumpkins the wedding theme?” Glorianna continues.

  “She . . . she said she liked fall,” stutters the planner.

  “You need to take this all down . . . right now,” says Glorianna. “It seems the scarecrows aren’t the only ones in this room in need of a brain,” she mutters under her breath.

  Where’s Yoni? Supposedly, we’re doing the wedding here so he and his family can organize it, but I haven’t seen any of them since last night’s rehearsal dinner. I call him.

  “We’re at the farmers’ market. Then Mom and my sisters have appointments to get their hair done,” he says in reply to my question.

  “You need to get over here. Immediately.”

  Yoni’s voice begins to rise. “This is why we hired a wedding planner—it’s my wedding day too and I have things I need to do. The planner will deal with the venue. It’s done! Everything is done!”

  He hangs up on me.

  As I hobble around the room, yanking down the ghoulish décor, I glance out one of the tall, arched windows. There, covered in grass and mud in the freezing rain, stand my sisters. They’re gathering wildflowers from the side of the road. Alone in the frigid hall, I begin to cry. My sisters are risking pneumonia, Lyme disease, and who knows what else picking weeds along the side of the highway. My aunt, uncle, grandmother, and brothers are building a chuppah at my sister-in-law’s abandoned house. Meanwhile, Yoni is browsing at the farmers’ market while his mother and sisters primp for my wedding.

  As I wonder how to tell my family that the wedding is off, I remember a story Dad told me years before.

  He was young—barely twenty-two—and he and Mom were planning to elope. He’d become friendly with the maintenance worker in his dorm, and, in light of his impending nuptials, the man shared a story with Dad. Around the time of the maintenance man’s wedding, his wife went a little crazy. They fought and she transformed into someone he felt he barely knew. The man wondered why he was getting married in the first place. The row was so traumatic that, shortly after their wedding, the couple divorced. The man said he didn’t realize that weddings make people crazy, and he looked back at the divorce as the biggest mistake of his life. His warning, verbatim, was: “Don’t let a little upset ruin a lifetime of happiness.” Dad said that was the best marriage advice he’d ever received.

  Inhale. Exhale. Maybe that was what this whole wedding was about. A whole lot of upset.

  Yoni’s family rarely talks about serious issues. Rejection is too scary—too permanent to talk about. Maybe it’s easier for Yoni to be angry about something he feels he can control. Like wedding colors. His work is demanding; my health, deteriorating. Perhaps this wedding is the only thing Yoni can control right now. Even if he’s doing a terrible job of it. Silently, I pray that after the wedding the man I’ve grown to love so much will reappear.

  With the wildflowers my sisters collect, flowers my grandmother brings from the market, and 200 sunflowers I’ve ordered, my sisters transform the hall into something worthy of its own Pinterest board. We head back toward town with very little time to spare. In the hotel room Yoni and I will share that night, there’s only one bed. As I slip on my wedding dress, I realize my makeup and shoes are miles away at the B and B where my family has been staying. It’s too far to retrieve them before the ceremony. Working her magic, Mercina shares her little pouch of makeup and jewelry, navigating around my oxygen cannula to make me feel beautiful.

  By the time we arrive at my sister-in-law’s house, we’re exhausted. Everyone is abuzz over the chuppah that Auntie Margot, Grandma Nancy, Uncle Justin, and my brothers have built out of knotted aspen trunks. The rabbi arrives. She has a mop of curly chestnut hair and she’s well into her pregnancy. Eldad keeps asking about her husband, but somehow, he always walks away before I can whisper, “She has a wife, not a husband.” She doesn’t seem to mind, though.

  Somehow, a pregnant lesbian rabbi seems about the right fit for this unlikely wedding. Wrapped in his grandfather’s prayer shawl, we end our (hummus-free) ceremony as Yoni breaks the glass and kisses me. The rest of the evening leaves much to be desired. But for these minutes, this house is filled with love. I silently pray that love will continue to follow us in our lives together.

  “What?!” I yelp, sitting at a table in our tiny apartment.

  “I need to look for another job,” repeats Yoni. “This just isn’t a good match.”

  The faint hum coming from the yellow light overhead is amplified to a deafening buzz as his words ring in my head.

  “What happened?” I ask.

  “The hours are insane. I’m the only man in the office and I’m totally isolated. I just don’t fit with the team,” he tries to explain.

  “This woman hired you away from another job,” I say, thinking about the impossible economy and all of the people we knew looking for jobs. “We have to make this work, Yoni—for your future. For the health insurance!” I’ve already surpassed my lifetime maximum and it isn’t clear if my insurance will pay for another transplant.

  “I know,” he says, obviously frustrated. “Please don’t tell anyone right now. I just can’t take it on top of everything else.”

  I agree reluctantly, worrying about how much more stress my increasingly delicate system can handle. Yoni is already working long hours. He’s often at the office past 10:00 p.m. My family is already complaining that he isn’t taking proper care of me. Simultaneously, he’s under assault from a mean girl manager—his hours will almost certainly get worse and I won’t be able to tell my family why. I try to explain this all to him, but it’s more than he can manage.

  Usually, members of my church help congregants when they have babies and when they’re sick. But it’s as if Yoni and I had tumbled into a chasm and everyone thinks someone else has already sent down a rope. My situation is so complex, no one—including us—knows exactly the kinds of help we need. My diet is complicated and one more infection will almost certainly kill me, leaving people nervous about cooking for us or visiting. The one exception are my brothers who’ve added butter and coconut cream as a vital food group for my very survival. I’ve dropped nearly thirty pounds since the start of the year and the scale continues its downward march. So Levi and his girlfriend bring me butter-poached steaks, granola, and French pastries. Tomicah and his wife make thick coconut soup and Zenith makes me vegetables that congeal into lumps of butter dotted with veggies when stored. Their efforts aside, I’ve never felt so lonely.

  Each morning, Yoni wakes up at 6:30, showers, and heads to the kitchen to make me breakfast and lunch. Before he leaves, he carries me into the living room where I sit for the remainder of the day, too exhausted to do anything else. When he gets home, he makes me dinner, cleans the kitchen, and carries me back to bed.

  Focusing on what I can do despite my illness has always been my saving grace. But now that list has all but disappeared. I don’t have the energy to paint, to read, or to play the piano. I can barely crawl to the bathroom, sometimes preferring to sit on the toilet all day so I don’t have to worry about how I’ll make it there when I next need to.

  Mom has traveled with me during all of my engagements, but my
grandmother and Mom’s grandbabies demand more of her time when she’s in DC. Lauri, the mother of one of my dearest friends, has recently relocated to DC. Her son Daniel, a lawyer and a quadriplegic, needs her help in the evenings, but she increasingly spends her days with me. We talk. She cooks for me and keeps me company. Lauri is a stunning model of true, Christlike charity. An angel of mercy during my dark night of the soul.

  Yoni’s parents join us in Washington for Thanksgiving. The meatless Turkey Day spread is magnificent—balsamic roasted beets with chèvre, cheddar-crusted apple pie, Marsha’s famous New York cheesecake—but I don’t eat a thing. Before the night is through, Yoni carries me back to the car and drives me home. Marsha and Eldad follow soon after.

  After preparing me for bed, Yoni rejoins his family in the living room. I listen through the cracked bedroom door as his parents speak—

  “Yoni,” says Marsha, “this is too much for you.”

  “We have help,” Yoni insists. “Lauri comes over almost every day. And Annette and Zen are here a lot too.”

  “No,” Marsha continues. I imagine she’s shaking her head vigorously as she says it.

  I take a deep drag of oxygen, anticipating the upcoming argument with dread. I can’t leave . . . I wonder if I can breathe if I use a pillow to drown out the sound of their voices?

  “You don’t understand,” Eldad interjects before I can lift the cushion over my ears. “I’m retired. I can come down. Charity needs someone here for her during the daytime. And you need someone here for you when you get home.”

  “And I can take care of myself,” Marsha chimes in. “Your father will make wonderful breakfasts and lunches for both of you!”

  I drop my pillow to the side of the bed and I begin to cry. I remember Dad’s advice: Don’t let a little upset ruin a lifetime of happiness. Our current situation is excruciating—sometimes I don’t even know if I can eke out a day of happiness, much less a lifetime. But the Dorons are a reminder of the things a happy life is built from, regardless of its length. Love. Commitment. Sacrifice. Even if I don’t want my in-laws to move into our apartment, I’m so grateful that they’re a part of my family.