The Encore

by Charity Tillemann-Dick

  “I was so proud of you today.”

  I begin to weep again, stirring up more hurt, disappointment, guilt, regret, fear, and pain than I ever knew I had inside of me. I tear my hand away from his and roll out of bed, crumpling onto the floor as my shoulders heave silently. He hurries over to pick me up and lay me back down in my bed.

  “No!” I cry, clinging to him. “Please! I don’t want to be alone! I don’t want to be alone!”

  He sits down and I drape my sweatpants-clad legs over his knees, clutching onto him like a frightened child.

  “I love you,” I gasp out between defeated sobs.

  As he softly presses his lips against my head, his tears wet my hair. “I love you so much,” he whispers.

  Crying in each other’s arms, we lose track of time. Then an alarm sounds, reminding me to take my evening medications. Getting up from Yoni’s lap, I navigate in the dark to the bathroom and swallow the handful of pills with a swig of tap water. Making my way back to the bedroom, I sit cross-legged on the bed facing Yoni.

  “What do you want to do now?” he asks.

  After a long silence, I nestle my head into his shoulder. “I want to marry you,” I say quietly.

  Yoni pushes me back by the shoulders, looking into my face by the light of the street lamps outside. He’s grinning as tears spill from the outer corners of his eyes.

  “Really?” he asks.

  Sitting in the dark, something changes. Big performances in big venues, fame, recognition. They all seem so small from where I am. Right now in this dark, crummy Cleveland hotel, only one thing matters. If I can do nothing else before I die, I want to be with Yoni. I want to be sealed to this man—to fall asleep in his bed at night and wake up by his side in the morning. My hopes, my dreams, my fears, my body. Whatever I have left in life, I want to share it with him.

  After years as an opera singer, I’m still not used to rejection. After breath, it’s one of the first things singers learn about. Every professional musician knows its sting. For each audition that goes well, there’s one or two or twenty that come to nothing. Some mistakenly tout talent (or its absence) as the mechanism by which some reach success and others do not. But chance is heavy-handed, redirecting many excellent singers to business or academia, jobs as parents, teachers, or real estate agents. The only reliable difference between a music major and a performer—the amateur and the professional—is in their ability to face rejection. It’s not the callback that makes you a singer. It’s what you do when the callback doesn’t come. Do you give up, or do you head to the next audition?

  I’ve always tried to approach professional rejection with a certain amount of honest introspection, trying to separate what I can improve (like breath control) from what’s out of my control (like other people’s personalities). It’s never a pleasant exercise, but at least there’s the potential for growth. The chronic rejection of my lungs has no comparable silver lining. The only direction to go is down.

  After my appointment in Cleveland, I return to Denver. I feel doomed. Every day is the Great and Terrible Day spoken of in Revelations—just without the greatness. My body is hosting its own judgment day and playing the roles of judge, jury, executioner, and accused in an awful, angry parody of God.

  We all host our own body god. It rests inside of each of us, waiting for a chance to exercise its engulfing power. The body god teaches us that we are inadequate and unworthy of love. It is the voice of cannot; the spirit of hopelessness, impotence, and indifferent observation. The body god knows our every weakness, misdeed, and misstep and it unceasingly whispers into our ear that those are all that matter. When we look in the mirror, our body god condemns fat and scars and wrinkles. It demands perfection while only acknowledging the imperfect. Where I find breath, my body god condemns Other. It is not the God of Abraham, Isaac, Jacob, Jesus, Mohammed, or anyone else. This is the God of Rejection and it knows my lungs don’t belong.

  Even here, back in my beloved home, I can’t help but feel out of place. My apartment has been filled by an exchange student, so I’m staying in my brother’s old room on the top floor. A wall of windows looks onto a vast azure sky and Parrish blue mountains peek out from behind February’s naked gray trees. I exhale into my breathing machine. Maybe, if I do everything right from here, the rejection will stabilize. Maybe I can stop it by sheer force of will. Even if I can’t, I can take care of myself long enough to finish my performance season. Long enough to marry Yoni.

  I’ve had a good life. My family loves me. I’ve followed my passion and experienced a great deal of goodness. I could complain about any number of things, but no one has ever wished me real harm. My problems aren’t the result of unkindness or ill will. All anyone has ever wanted to do is help me. My body just won’t be helped. That, I tell myself, is a pretty charmed challenge to have. There’s a knock at my door.

  “Chary, sweetheart,” Mom says as she cracks the door open, “can I come in?”

  “Of course!” I wave her into the room, crawling out of bed to clean up.

  “No, no, no. Don’t do that. You rest. I just brought you some clean towels,” she says, offering me a short stack of linens. “You’re not too lonely up here, are you?”

  “No,” I insist. “This is perfect. It gives me a little breathing room.”

  We both smile at the unintended pun, then sigh.

  “Charity,” Mom continues, “do you want to think about canceling the events in Florida and Milwaukee?”

  “No,” I respond resolutely.

  “Charity. You’re sick. You should be resting with your family.”

  “Mom, I don’t have a house or an apartment. I don’t have a dog or a cat. Even if Yoni and I get married, I don’t have kids and I probably never will.”

  “Don’t say that,” chastises Mom.

  “—But I have my voice, and there is nothing I want to do more than sing.”

  “Well, that’s just silly, Charity,” she says. “You can sing here. And there are lots of other things you can do too.”

  “But, Mom, I’m a performer. You know it’s true. It’s been true since I was a little girl.”

  She takes a deep breath. She doesn’t want an argument. “Well, I’ve made lunch. Come downstairs whenever you’re ready.”

  Over the next weeks, my return to dependency is emotionally draining. But it is wonderful to spend time with my family, and Mom, Shiloh, Mercina, Glorianna, Zen, and I have some wonderful adventures together. I miss Yoni, though, and once again, we’re thousands of miles apart.

  Finally, we meet in Florida where I’m opening for a large conference. The night before my performance, our hosts take us out to dinner. Usually, I try to socialize minimally before a performance. It allows me to focus and avoid germs. But we’ve already accepted the invitation and I don’t want to back out. As the sun sets over the Gulf Coast, the wife of the conference organizer asks me about the subject of my talk from across the table. She knows I’m an opera singer, but that’s all. Not wanting to spoil the surprise, I explain the thesis of my talk instead of telling her my story—

  “I’m going to speak about how physical challenges shouldn’t stop us from pursuing our dreams.”

  “Stop right there,” she commands. “That is not going to go over well with this audience. This little beauty queen up there onstage telling successful people twice her age—people who’ve seen parents die, who’ve probably had hip replacements or even pacemakers—telling us about how we should live with all that crap?” She shakes her head. “No. It’s just totally inappropriate. If you want to hear about hard times, you should listen to the people in this audience. They don’t want to hear about your so-called challenges and they certainly don’t want to be lectured on how to be better people. I mean, these people have given more money to charity than you can even imagine.”

  “Well, I’ve never seen a penny of it,” I say, not skipping a beat. The joke falls flat.

  It’s said that 80 percent of people think their story wou
ld make a great book. Many people have had challenges every bit as heart-rending and dramatic as my own. But my ordeal has been made significantly less frightening thanks to others who have been willing to share their struggles with me. I’ve never before felt so inappropriately ridiculed. Here I am, volunteering some of what little time I have left, and being talked down to by an aging dilettante. I’m furious—

  “Extra decades do not give you or anyone else a monopoly on heartache,” I say, trying to restrain myself. “There are children who see their families ravaged by war and soldiers who lose limbs. While I respect the wisdom that can come with age, it’s foolish to assume that just because someone is young or attractive that they haven’t faced true hardship.”

  “You’re not exactly a limbless child soldier,” she scoffs back. “And I am telling you that if you give that kind of crap to this audience, they will laugh you out of the theater—and so will I.”

  I’m silent for the rest of our meal, leaving Yoni to navigate this situation as amicably as he’s able.

  That night, her words echo in my dreams. I wake up early and unsure. Maybe I should just sing musical theater? Maybe I should drop my talk and speak off the cuff? Maybe I should talk about rejection instead? Yoni interrupts my list, grabbing me by the shoulders.

  “Charity,” he pleads, “stop. That woman last night? She was probably drunk and, regardless, has no idea what she’s talking about. Sometimes, people just like to make themselves feel important. What you have to share—it’s a miracle. I mean, if Martha Stewart loved it, so will these schlubs. You just do what you do best. You’ll be great. You always are.”

  When I make my way onto the stage, I see my dinner companion from the previous night sitting front and center, arms folded across her chest. I sing like it’s my debut at the Met. My cadenzas are cleaner, legatos smoother, my fortes fuller, and trills more delicate. The talk is the same way. Within minutes, half of the audience is in tears. With my final pronouncement, I point directly at her—

  “I want to tell you that disease shouldn’t divorce us from our dreams. When we live the lives we’re supposed to, patients don’t just survive; we thrive. Some of us might even sing.”

  She jumps to her feet in applause and the rest of the audience follows.

  My performances continue with stops in Colorado and Washington, DC, in between. After going to Milwaukee on my own, I realize that Mom is right: I need support. Shiloh accompanies me to Monterey during his spring break. He’s a natural at these conferences—garrulous, brilliant, and eager to learn whatever he can from every person he meets.

  The morning of my performance, I awake to a vomit-inducing headache. But a performer’s job is to get onstage and leave everything else behind—nausea included. Still, singing and telling my story while ignoring the drama currently unfolding inside of my body feels like a lie. No one wants a sad ending, I remind myself over and over. Ovations greet me as I crisscross the country, but they offer little comfort. I’m too distracted, mourning my future death.

  By April, it seems everyone wants to tell my story. CNN reruns the piece produced at TEDMED and the Oprah Winfrey Network contacts me about a TV show. Reader’s Digest is working on a cover story, and I know that telling them that my wonderful tale of triumph is just a tragedy waiting to happen will sour their interest. But there is another story I want to tell. One much bigger than my own.

  Transplants trade one chronic or terminal disease for another. It’s a lifeline, not a perfect solution. Every year, twenty-eight thousand people don’t realize how little research is being done on how to keep their transplanted organs healthy. While part of me wants to discuss the challenges and shortcomings of transplantation, I don’t want to discourage people from donating their organs by making them think it’s ineffective. I also don’t want to discourage people from moving forward with a transplant if they need it. I am so grateful to be alive, I just hoped I’d have a little longer than eight months of relative well-being before getting thrust back into a long-term medical crisis.

  In mid-April, I receive a message on Facebook. It’s an invitation to debut at Lincoln Center. Inhale. Exhale. This must be a joke. I mean, who invites someone to sing at Lincoln Center over Facebook? But it turns out the note is actually from a major producer. As we communicate more, it becomes clear that this won’t be just any debut. I’ll be a headliner alongside some of my own musical heroes. And they don’t want me to talk or tell my story, they just want me to sing! Afraid I might jinx it, I don’t tell anyone for a while. But I already know, even if it’s the last thing I ever do, I’m going to get there.

  My health-care company, Kaiser Permanente, has been amazing through all of my medical woes, but they don’t have a syndicate in New York, so Washington becomes home base. I can’t live alone, but it quickly becomes obvious that staying with family isn’t a perfect solution, either. The constant volume of babies and dogs and visitors leaves me vulnerable to germs, and my regime of perpetual sanitization is not sustainable.

  Shortly after I return, I go to lunch with a friend, JaLynn Prince. An advocate and arts patron in Washington, DC, she asks if I’d like to take up residence in her and her husband’s sprawling, Italianate home in Potomac, Maryland. I jump at the offer. The Princes have a piano, plenty of space, and fresh air galore. I’m so grateful for their graciousness. But they travel frequently, leaving me with only my wheezing lungs for company in the spacious mansion.

  Levi treks up to visit me from DC every week or so. Immediately beside each other in the sibling lineup, he’s the black sheep and I’m the family zealot. But the devil on his shoulder and the angel on mine are fast friends, and we’ve always shared a special affection for each other. He works in the kitchen as we talk. Then he invariably comes around the counter with a smoothie—each more delicious than the one preceding it. Little do I know that, worried about my gradual weight loss, Levi has made it his personal crusade to stuff as many calories into me as he can muster. Artfully masked by fruits and ice creams, the shakes are filled with everything from whole pieces of pie to raw egg yolks.

  The good news is that Yoni has finally found a job in DC. For the past two and a half years, we’ve lived in different parts of the country. Initially, the distance wasn’t terrible. It gave us both the space we needed to decide whether we really wanted to be together. But now that we’re committed, it’s become a nuisance. We’re both eager to live near each other and officially check the last item off our list of things that need to happen before we can get engaged.

  Yoni needs to go to New York to get some things he’d been storing at his parents’ house. I need a lesson, so we drive up together. But that’s not the only reason we’re going to New York.

  We walk into his parents’ house side by side, fingers laced. Sitting down in the sunken living room couch, my palms begin to sweat. Yoni’s parents, Marsha and Eldad, sit facing us. About five foot three inches with a mop of curly brown hair that makes her look taller than she actually is, Marsha is a Long Island schoolteacher. Eldad, a hair shorter than me with a giant black mustache, loves nothing more than a good argument—often happy to play devil’s advocate if he thinks it will enliven a conversation.

  Yoni begins, “We just want you guys to know now, we’re planning to get married.”

  Eldad looks at Yoni, then Marsha, then back to Yoni. Over and over again. “What about religion?” he says, his Israeli accent sounding thicker than usual.

  “Well,” I say nervously, gripping Yoni’s hand more tightly, “we want to share a religious identity.”

  His father stares at Marsha uncomfortably.

  “Charity’s already Jewish,” Yoni clarifies. “We do Shabbat a fair amount and celebrate the holidays together. I go to church with her on Sundays. It makes us happy.”

  “And the children?” asks his father.

  “It’s a little complicated,” I admit. “Because of the transplant, it’s very unlikely I’ll have children myself. I’d love to adopt, but the germs m
ake everything more complicated. I know children are a very important part of a marriage and that you both must be worried—”

  “Stop right there,” Marsha interrupts me and I feel my shoulders tense.

  “I don’t want to hear anything about that,” she continues, leaning forward. “That can happen to anyone—anyone. It can happen to the healthiest person in the world. It is the last thing I want you two to think about. It shouldn’t have anything to do with your decision to get married.” Marsha sits back on the couch, almost defiant in her conviction.

  I feel myself relax and my lips spontaneously rise in a smile. For all of our differences, it’s moments like these that give me a deep appreciation for Yoni’s parents. Their aspirations aren’t complicated—they want their kids to be able to support themselves and their families, to honor their cultural traditions. But most of all, they want them to be happy.

  As Yoni and his parents banter back and forth, I realize that, for all of my lofty dreams of great stages, that’s all I want too. I just want to be happy. A verse buried deep in Mormon scripture states that “Men are that they might have joy.” Everything else boils down to this short sentence. It’s comforting to see that our families’ deepest dogmas align so effortlessly.

  The next morning, Marsha joins Yoni and me around the kitchen table. “I have something for you,” she says. “I saw the post on your blog with all of those awful gaudy rings you like and I called my sister and said, ‘Carol, those look just like our mother’s, don’t they?’ So we dropped by the safe deposit box this morning.”

  With that, she spreads a slew of old rings across the counter, and I see it. A gold filigreed ring with a pale white stone inlaid. Immediately, the artistry and craftsmanship grip me.

  “Thank you, Marsha! I love it!”

  It’s perfect—a part of Yoni’s past that could have been something I chose for myself. It will be an honor and a pleasure to wear it.