NORMA: an excerpt from The Encore by Charity Tillemann-Dick

The mid-November darkness settles early in the afternoon. As my window dims, a tall man with a chocolate complexion peeks through the door. “Charity,” his rich baritone voice fills my small room, “I’m one of the chaplains here. I’ve heard you’ve been having a hard time. Would you mind if I sang a song for you?”
I smile and nod my head. I’m just getting over a fentanyl headache and I haven’t heard anyone really sing in months. I close my eyes and feel the air in the small room move as he inhales deeply. Swells of sound pulse over me as the chaplain belts the chorus of “Amazing Grace” with a rich, mature tone. His melody is a salve for my aching body. But its lyrics sting. Listening to them, I can’t help but dwell on the grace I’ve received this year: from my donor, Mom, doctors, family and friends, God. But no matter how hard I work, I come up short. I know grace has already saved my life; that grace will get me out of this hospital and, ultimately, lead me home. But all of this grace is frustrating.
I’m a glutton for miracles. But while other people get miracles like dream jobs, babies, debuts and houses, my miracle is not being dead. Don’t get me wrong: Not dying has significant benefits. But before I got sick my talent, artistry and hard work was what people recognized and appreciated, not some visible or invisible hand of benevolence. Personally, I’ve always appreciated the human and heavenly hands at work in my life—trying to show my appreciation in the way I live and work and strive for worthy goals. And then I got sick.
Now, it’s like that one Christmas when Santa obviously didn’t get my letter. I have to be grateful for gifts I never asked for in the first place. Someone else has to lift my bags and hail my cabs. I need special food and perpetual hand sanitizer. I’m in a place of unending gratitude, and it can get exhausting. Some days, I’m not grateful that my sister carries in the groceries; I’m not grateful that my siblings are alone in Denver while Mom sleeps in my hospital room. I’m not grateful for the tubes coming out of my neck, my arms and my chest—even though they’re saving my life. I wish I had my own lungs. I wish I was back in Europe singing. I wish Mom was home in Denver sleeping in her own bed. I wish I caused less hardship and sorrow. I wish that, instead of giving me so many little miracles, God would have just given me the one miracle I most wanted. Wouldn’t it have been simpler to just cure my PH? Or not give it to me in the first place! Don’t get me wrong. I love miracles. And I love Jesus. I need grace every day. But in my life, the things other people get to claim it as their own achievements turn into my miracles. It’s like everything I do is accompanied by heavenly jazz hands.
As the chaplain sings the last verse, the messages swirls through me in a vortex of frustrated, confused, resentful gratitude—
When we’ve been there ten thousand years
Bright shining as the sun
There’s no less days to sing God’s praise
Than when we’ve first begun.
I stifle my tears long enough to thank him before he leaves. Then I let loose. Does God not love me enough, or does he love me too much? Whatever it is, all of this grace is confusing, exhausting and it feels increasingly physically dangerous.
Charity Sunshine Tillemann-Dick is a soprano, composer, and best-selling Billboard classical artist. Her book, The Encore, was published with Atria Books and Simon & Schuster last fall. To listen to Ms. Tillemann-Dick’s art, please follow this link to a performance given at the Kauffman Center for the Performing Arts in Kansas City, Missouri.