Patients & Caregivers

Real Life Stories
Meet Amanda

Amanda Handley, a world-renowned opera singer, whose very breath enables her to practice her art…whose every breath can bring debilitating pain….lives and performs with pericarditis. This is her story.

Amanda is among the world’s premier opera singers. In a review of her Met debut the New York Times critic noted that “She sang with nuance and taste and made a vulnerable Countess,” and called her voice “ample and expressive.” Richard Brody in the New Yorker wrote that her “large, overtone-rich voice captures the character’s grand and refined ardor.” The New York Daily News called her “captivating” and said her arias “throbbed with beauty and anguish.” All this praise for a woman who is managing to be an international star whilst living and working with a diagnosis of pericarditis.

Amanda was born on October 20, 1984 and raised in a Chicago suburb. She has a Bachelor of Music in Voice Performance from Northwestern University, a Master of Music in Opera from Curtis Institute of Music and is an Alumna of Ryan Opera Center at Lyric Opera of Chicago. Amanda currently lives in Chicago with her husband, bass-baritone Sam Handley. A seasoned professional, Amanda’s pericarditis journey started at age six when her mom would find her screaming in pain. Things calmed down but the pain returned in college – chest pain with each breath and pain when she bent over, pain that radiated to her shoulder.

2016 found Amanda at Lyric Opera of Chicago performing a very demanding role (The Marschallin, in Der Rosenkavalier by Strauss.) The role requires poise, regality, a strong sense of self, and, most importantly, wearing a costume with a corset. While rehearsing, Amanda experienced pain so severe, pain accompanied for the first time by dizziness, that she left the rehearsal stage and found her way to the rehearsal department where she immediately asked to be taken to the hospital emergency department. There they found her SED rate elevated – (SED rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body)- – and reactive protein and fever all pointing to pericarditis. That night in a Chicago emergency department far from home she received the diagnosis that was to alter her life. Today she takes colchicine twice daily and had no episodes for two years. Life quieted down – seemingly the pericarditis was under control. Until a flare – this time in Madrid where she was performing in Wagner’s Götterdämmerung as Norn and Gutrune.

Some background on what it takes to be an opera singer – It takes control of ones breathing to increase resonance and to soar. To be able to sing beautifully one must be able to support and control your breath. But when every breath is accompanied by pain the ability to focus – the essence of the professional singer – is compromised. What the audience may not see beyond the beatific voice is the panic deep inside – the panic that the pain will come back with such intensity that it will make singing impossible. Amanda has garnered critical acclaim for a voice of “silvery beauty” (Musical America) and has performed the world over – from Hollywood to Hong Kong – but regardless of which opera house she finds herself in – the nagging worry of will it come back – will it come back tonight – is ever-present. Knowing she will have to perform and that she will do her best despite at times not being able to feel the expanse of the inhale low near her bottom rib. The radiating pain of pericarditis in her chest prevents her from taking and feeling the breath that guides her art. The pain, when accompanied by dizziness, makes performing properly and to the best of her ability a herculean task. When the role requires that you run across the stage – but you are in pain and dizzy – only fierce determination and a profound commitment to communicate the musical moment to the audience gets you through. Imagine being a performer in pain, in a place far from home, where you may or may not know the language – trying to explain to doctors you’ve never seen before that you have recurrent pericarditis. And that you need to practice you art. There are no days off.

As a true professional and a gifted artist Amanda continues to pursue her art – to sing with abandon – all the while secretly praying for no more flares. That night in Chicago changed Amanda’s life in many ways. Not only was it the beginning of a life to be lived with a chronic disease but also a life made all the richer for the experience with, and understanding of, life and just how precious and fleeting it is. Today, when she thinks about the role of The Marschallin she understands the character and the role in a new light, a light informed by pericarditis and a deeper understanding of the vagaries of life and the importance of holding tight to your dreams. Today when she performs as The Marschallin she performs as a woman so much wiser than the woman who performed that night in Chicago.

Amanda has never missed a performance because of pericarditis. With strength and valor, professionalism and just a bit of stubbornness, on stage she goes to serve the music and serve the audience – no matter the pain or discomfort.

Amanda’s story isn’t over – She continues to sing – continues to advocate for research and support for persons with recurrent pericarditis and continues to give back to this world through her beautiful voice which charms all lucky enough to hear it – the world over.