The Encore

by Charity Tillemann-Dick

  Ten years after I first embarked on my great medical saga, I no longer feel the stage fright I used to get before doctor’s appointments. I no longer fear rejection. Walking beside the woman who gave me life and the man who taught me to love as we celebrate the young woman who gifted me breath, I feel complete. Even the greatest divas die. But like a timeless melody, true greatness never does. The greatest music, thoughts, innovations, equations, and scientific breakthroughs move from one person to the next, traveling to far-off places—different continents and bodies. They are revised and amplified, deconstructed and stripped down until their very existence seems to be irretrievable. Only from that precipice—that abandonment of self for love of something more—can lasting greatness ascend.

  As I gaze smiling into the prairie galaxy stretching out ahead of me, I don’t realize that this moment will end and, with it, my long season of calm, of joy, and accomplishment. As we walk, the drugs that protect my lungs from rejection are simultaneously eating away at my body’s natural defenses against cancerous sun rays. My vulnerable porcelain complexion has already been invaded by soon-to-be-visible clumps of spindle squamous cells. They’ll breed at astonishing rates and migrate from my forehead all the way to the parotid gland near my jaw. Over the course of weeks, I’ll watch helplessly in the mirror as my visage is mutated by grape- and softball-sized tumors. The next months will bring more surgeries. Chemo. Radiation. A year from now, my beautiful, beloved face will have been forever changed—irreparably marred for the sake of saving my very life. The agony of a slow and incomplete recovery will ask much more of me—my faith and my resolve—than I ever could imagine being able to give. Perhaps hardest of all, the removal of a cancer-infested nerve in my cheek will leave me unable to ever really smile again.

  But none of that matters right now. Right now, I’m playing a bit role in something truly great. Somehow, I know this is a moment to be still. A moment to feel awe and to bask in the greatest wonder of all: the love that binds us together and gives us reason to live. The love that offers each of us a small measure of immortality. The love that continually testifies—whether or not we’re wise enough to listen—that we’ve been Great all along.

  CURTAIN CALL

  It would take volumes to adequately acknowledge every person who made not just this memoir but also my continued existence on this planet a reality. So, for the sake of brevity, please keep up the applause for this highly abridged list of accolades. Thank you very much.

  Rakesh Satyal, between music, writing, and so many other things, I couldn’t have imagined someone better suited to understand this complex story. Thank you. Sarah Branham, when you believed in this project so doggedly, you made me believe in it too. Thank you for signing an unproven author, for the time you spent on the manuscript with me, and for being a fierce advocate on my and the book’s behalf. Judith Curr and Peter Borland, thank you for your vision. Paul Olsewski, Albert Tang, and the entire Atria and Simon & Schuster family, thank you for accommodating my many challenges and bringing me into your literary family. To Isolde Sauer and your team, thank you for your attention to detail. Loan Le, Anne Badman, and Haley, thank you for keeping things from falling through the many cracks that exist in the publishing world. Elisa Rivlin, thank you for your excellent judgment.

  Glorianna Tillemann-Dick, this book would probably still be unpublished if you hadn’t come to its rescue. Who would have thought my baby sister would be such a gifted editor, friend, and literary architect? I always knew you were one of the more brilliant people I’d ever met. What I didn’t realize was how I would come to depend on you to find my voice on the page. There were late nights, long months, and fights (nasty and ill timed, of course), but you have taken my literary mess of human experience and helped me create something of true beauty.

  Sloan Harris, you should be some dreamy and benevolent character in a book. Like my dear mother, you know that excellence demands time, effort, and the fear of God. You demanded nothing less than my best; you knew when I could give more, and you inspired my most literary self, my greatest writing, and, occasionally, my ire. Thank you for giving your best to me and all of your protégés. Truly, your best is the best in the business. For that and a host of other things, I thank you.

  A. J. Jacobs, thank you for your help. You’re the dictionary definition of a mensch. Joel Warner, thank you for your encouragement during this punishing journey. Michael Lewis, I would have never believed that an author I fan-girled over would have been so instrumental to me signing my own book deal. Thank you for getting me started down this perilous road of memoir. Dr. Greg and JaLynn Prince, thank you for being among the very first to encourage my writing, for putting a roof over my head, and for the hours you spent interviewing me—preserving my story should I not have made it through my second transplant. Janet Walters and Katie King, thank you for your patience, your encouragement, and for being my very first editors many years ago.

  Karen Clifton Kappler, I didn’t practice like I should have, but it didn’t stop you from being a compassionate teacher who made a difference in my life and starting me on my road to music. Amina Harris, bless you. Bless you so much. You set the stage for so much happiness—a magical interlude in a beautiful but challenging life. Thank you so much for your kindness. Bruno Rigacci, Pietro Rigacci, and Ulla, thank you for making me a part of your musical life and your world in Italy. I hope to join you again sometime soon. Gidon and Suniva Graetz, thank you for changing my life for the better, for opening doors to your home, your hearts, and a life for me in Italy. There were few times happier and more carefree than those I spent in Fiesole.

  Éva Ándor, without you, I doubt I would have ever stayed on the path to music. You and Gabriella Gyöker’s belief in me made me believe in myself and my talent. Éva Márton, to study with one of my musical heroes, to work with you and be mentored by you, taught me more about artistry than almost anything. Rita Patane, thank you for teaching me a technique. I never understood what a real technique was until I sang with you. I miss you and I hope you are so well. Cathy Kasch, you are a wonderful teacher and thank you for helping to shape my gifts. David Michael Heath, thank you for helping me find my voice again. Deb Birnbaum, thank you for helping me find my breath.

  Joan Dornemann, you’re one of a kind, and I am so grateful to count you a mentor and friend. Erzsébet Kocsis, thank you for taking time to teach me and mentor me. I imagine Zoltán still making amazing music somewhere in the universe. Joela Jones, as musicians and partners, your and Richard Weiss’s friendship has been a balm to my soul, your faith bolstered me through dark nights, and your musicianship inspires me. Stephanie Rhodes, Dr. Nan Shannon, Zsuzsanna Hynoncyi, Ella and Noam Sheriff, Erzsébet Hegyi, András Batta, Julia Paszty, Susan Weiss, Steve Rainbolt, Ernie Ligon, Karen Salient, Amy Beth Kirsten, William Johnson, Mignon Dunn, Marlena Malas, Gerald Martin Moore, Mark Robson, William Woodruff, Lawrence Edelson, Joachim Schamberger, Bob Cowart, Hemdi Kfir, Eileen Cornett, Phyllis Bryn-Julson, MaryAnn Squassabia, Marc Oswald, Lisa Hopkins Seegmiller, Joseph Olson, Moisés Kaufman, David Binder, Michael Friedman, Barb Wollen . . . there are a dozen more of you whom I love and thank for all your encouragement, your wisdom, your time, and your guidance over the years.

  Emily Roskowski, my St. K(C)atherines—Katie Lyon Dayton and the Lyon family, Kathy Ruekberg, Katie Fredriskson, and Cathy Bleck—Ruth Eldredge Thomas, Pingkan Zaremba, Susan and the Casteras-Schnapper family, Mohammed Al-matrafi, Christina Kim Homer, Mary Salmon, Jen Gonzalez, Elder Jeffrey R. Holland, Lori Laitman and Bruce Rosenblum, Csilla Nagy-Prunier, Marina, Lavi, and Nicoletta Karam, Christina Germani Killian-Benigno, Ann Robert, Shannon Michelson Duplisea and family, the Palmers, Bert and Carol Walker, Marty and Ali Bell, Danielle and Michael Gross, Daisy Soros, Ginny Kooyman, Jjana, Char and Niels Valentiner, and Nancy and David Rivard; Krista Linford, Tarannum Jaleel, Sui Lang Panoke, Darren Howell and MaryJoy Ballantyne, Nancy and Robert Ricks, Elindra Garvin, Tawanna Lassey, Elaine Qualter, Sonja Sweek, Jovy Cone, Step
hanie Soper, Wanda White, Haylie Swenson, Tanya Spackman, and my sisters and brothers in the Capitol Hill Ward and Relief Society; Norris and Carol Mills, Jenny S. Preece, and my congregations in Baltimore, Budapest, and Florence; Jeannette Estruth, Craig Webster, Damian Stammer, Elyse Pitock, and Nancy Livingston, I’m crunching you all together because you’re the vertebrae in my friend backbone. You hold me up when I can’t do it myself. You bolster me when I need it most. I know that if you’re all still my friends, I won’t fall. You won’t let me. You’ll help me fly again. How fortunate I am to have all of you.

  Christine, Ben, and the whole Sandoval family, Elizabeth Vigil, Celeste Gallegos Applegarth, Ginger Jones, and my old D-2 crowd, thank you for the cards, prayers, and love through this whole drama. Thank you to the Cohen crowd, my North Denver crowd, to Fr. Michael J. Sheeran and my friends and mentors from Regis University and the broader Colorado community for the encouragement and support. Lauri, Ted, Dan and the broader Leslie brood, my family in triumph and tragedy, you are my exemplars and dear friends. To my transplant sisters and all my PHriends, each day you inspire me to push on. To Melitta Weber-Hunter, I miss you but thank you for your generosity of spirit. Your wisdom got me through my second transplant.

  Nate Mook, and David and Sylvia Steiner, thank you for your kindness, friendship, and support. Esther Coopersmith, thank you for being there from the start. Mike Bates, thank you for marrying an amazing person (Christine, you’re wonderful), for seeing something in me and jump-starting my career when I worried there was nothing to salvage. Marc Hodosh, thank you for trusting Mike Bates, for believing in me, for offering me wisdom, advice, and friendship. You’re a wonderful man and I’m grateful to know you. Sonia Rhodes, gosh, I am happy I ran into you that day in the ladies’ room. You were leaning in before it was a thing. As a colleague, friend, and example, I thank you and your team of angels from the very bottom of my engorged heart. Michael Hawley, Nina You, David Bolinsky, and Patty Harris, I am so grateful for the wonder-makers of the world like you.

  Dennis and Elizabeth Kucinich, thank you for coming with me to those first Cleveland appointments. You sat there with me and Mom all day just so we wouldn’t feel alone. We love you. Todd and Yadira Patkin, your friendship and generosity over the years have been a source of both inspiration and peace. Thank you for your love, wisdom, and kindness, and for finding happiness. Dawn Arnall, you’ve always rendered such selfless service and loving friendship when I was in greatest need of it. Todd Albrecht and Joe Keller, thank you for marrying Claudia and Emily, respectively. What beautiful families you two have built on faith and service. Thank you for rendering so much of that service to me and to so many others.

  Thank you to the families of my surgeons, doctors, nurses, techs, and administrators. It must take herculean love to help these women and men care for the least among us. You sacrifice family dinners, recitals, sports games, milestones, and, sometimes, a personal life with your loved ones and allow them to care for patients like me. To the grandparents, parents, siblings, friends, spouses, and children who support this call to care and to give life, thank you.

  Dr. Christopher Lang, I had a lot to say about you, but time after time your sections were cut out of the book. Sometimes the most important heroes go unsung. While your role in the book wasn’t a central feature, you’ve been center stage in facilitating and preserving my life for more than a decade now. You and your wife and family are examples of purpose-driven lives and of the best Ohio, Kaiser Permanente, Colorado, and America have to offer. Sarah O’Leary, Faye, and the whole team—thank you for helping sort through the bureaucratic nightmare that is my life. Libbie Griffin and Joan, I am so grateful you have one another and that I have you. Thank you for your friendship and dedicated service over these many, many years. Kaiser Permanente, I’m sorry I’ve cost you so much money. Thank you for taking care of me anyway. I’m so grateful to have health insurance that ensures my health care. Thank you to everyone who’s helped instead of being a roadblock. My blood labs at Kaiser in Wheatridge, Denver, Capitol Hill (Abeba, Kenny, Kim, and Keith), and the Cleveland Clinic—thank you for never missing a prick and for making those morning blood draws less traumatic. Jeff and Anita in Cleveland, thank you for always taking such good care of me. Thank you, radiology team—Lydia and all of my techs, nurses, doctors, secretaries. Thank you to the emergency clinic and the docs there who have nursed me to health or helped me in my darkest hours. Dr. Mayo-Olano, Dr. Naftanel, Dr. Meltzer, Dr. Mesfin, Dr. Martinez, Dr. Lee, and Dr. Vongkovit, your skill, patience, and assistance have been central to my life continuing. Thank you for always making time and making sure the job gets done and gets done well. Dr. Paul Hasoon, Dr. Atul Mehta, Dr. Louis Christopher Benjamin, Dr. Andrea Moriera Gonzalez, Dr. David Badesh, Dr. Irene Lang in Vienna, Dr. Ashish Maskey, Dr. Hunter Champion, and Dr. Susan Mills (I believe that is your name. You were the first person to diagnose my PH), Dr. Eileen Hsich, Dr. Chapman, Dr. Mohanka, Dr. Dan, Dr. Adeli, Dr. Kaiser, Dr. Bourdakis, Dr. Robin Patel, Dr. Tathagat “Tiger” Narula, Dr. Joe Kabazza, Dr. Rafid Fadul, Dr. Olufemi Akindape, Dr. Christine Koval, Dr. Michael Machuzak, Dr. Gohar Dar, Dr. Gosta Petersson, Dr. Tom Gildea, Dr. Randall Lane, Dr. Maryam Valapour . . . . There are far more of you than I could hope to list. Thank you all for taking care of me, for helping to keep me alive or helping to bring me back from the dead. More recently, I want to thank Drs. Burkey, Adelstein, Prendes, Koyfmann, and Vidimos, and your respective teams. Ming Tang Xu, you are a wonder and a gift. Thank you for using your talents to help me and so many others.

  My respiratory therapists in the Crile building, ReSCU and ICU, thank you. Matt—a light in the midst of so much darkness—when you came into my room, I knew everything would be OK. Thank you for helping me breathe when no one else could. Marko, Margaret, and Bill, you were my dream team. My music man Gerry, Russ, Chelsea, Kathy, Kim, and David Wheeler: Thank you so much.

  To my teams in J5–5, J8–3, and ReSCU, I was so drugged out that I’ve forgotten a lot of names. But I know that you saved me so many times. You were my friends, my rescuers, and my family during a very dark time. You made me feel safe and secure. As soon as I was rolled into ReSCU, I remember this tall, handsome black guy with the awesome band tat around his bicep. He was this Iraq vet who’d served a few tours—the definition of hard core. But that man was as kind and gentle as a mother with a newborn. That’s how you all were. You were tough as nails, while treating your patients with nothing except respect and compassion. Lidia and your team on J8–3: Lady, you run a tight ship! Allison, Andrea, Antoinette, April, Ashley, Barb, Bill, Bisi, Brandee, Brittany, Bruce, Carol, Cassie, Claudia, Chivelia, Christina, Cindy, Colleen, Craig, Dana, Danielle, Davida, Dean, Desiree, Elisa, Evalina, Fred, Greg, Katie, Katie, Katie, Katherine, Kay, Kristen, Kirstin, Christine, Christian, Gary, Hannah, Heather, Hia-Chun, Ilona, Janet, Jay, Joe, Judith, Laura, Laura, Lauren, Leonard, Mirabelle, Mary, Marleen, Melanie, Meghan, Matt, Michelle, Marc, Molly, Myrna, Nick, Peaches, Ronnie, Sandy, Sarah, Sarah T., Shannon, Tracey, Cheryl, Valeria, Vaughn, Zoe, and my guy team of nurses—I don’t remember all of your names, but thank you for taking such good care of me.

  In my attempts to contact my caretakers for this project, I found out that one of my favorite nurses, Ryan D. Williams, died a year after my first transplant. To his family and friends—Ryan’s kind, dedicated service was an inspiration. He used his physical strength and kind spirit to make my life easier. His patients loved him as much as his colleagues. During a very insecure time, he always made me feel safe. I am so grateful to have known him.

  Judge Nancy McDonough—you tough, wonderful lady, I am so grateful to know you! John Kosko and Helen, thank you for being right there with us through this. Jane and John Jr., you are super troupers. Lynn Clutter, I think about you so often. Thank you for being our neighbor and friend through so much of this. Huda, thank you for being my sister in the hospital. I love you dearly. Dana, Piper, I hope you’re both doing so much better!

  Dr.
Kalpana Trivedi—you’re the best dentist in the DC area. Alex, Angie, Cathy, Keith, Keylynn, Livia, Laura, Nora, and Summer—also Tracie from Johns Hopkins. Thank you for helping to keep me alive for all of these years.

  Dr. Robyn Barst left this world in 2013 after a valiant life before and after cancer. Today, there are twenty-nine drugs approved for the treatment of pulmonary arterial hypertension. She is an example of how one life can push forward change that makes the world measurably better. To Nomi, Lindsey, and Dr. Samuel Barst, thank you for sharing her with us and for allowing me to use her letter.

  Dr. Marie Budev, thank you for being a role model, a dear friend, and a truly exceptional doctor. Drs. Ken McCurry, Reda Girgis, Robin Avery, and James Yun—you are four of the finest people I have ever known. You are gifts to science and humanity. Dr. Toby and Anita Cosgrove: thank you for running an incredible organization and for making me feel like a part of the Cleveland Clinic and broader Cleveland family. You’ve assembled one of the most remarkable teams in the world, and I feel so blessed to have benefited from both the care you oversee and your personal kindness. Jeanne Murphy, you are an angel of mercy. Angela Kiska, Andrea Pacetti, Scott Heasley, Dave Braun, and the Cleveland Clinic’s media office, thank you for all of the time you have devoted to helping me.

  To Carol and Josh Gat, thank you for graciously housing us so many times and for having a great crew like Tanya, Michael, Maya, Tarkan, and the grandkids. Maya Gat and the Branching Minds Team, you’ve built an amazing product, and I’m grateful to be connected to something that is making education better. Marsha, Eldad, Shelly, Daniella, and Noah—thank you for making me a part of the family. Last year was quite a ride (can we promise to never ever try that ride again?), but somehow we survived.