“… Be loud
And move with grace
Explode with light
Have no fear …”
These are the simple and powerful words of a courageous young girl named Sophie Steiner. Sophie’s story is one of hope and sorrow, resilience and despair, and ultimately, life and death.
I met Sophie only once. In 2012 her father, Dr. Niklaus Steiner, brought her to a poetry open mic I was hosting at Flyleaf Books in Chapel Hill. I remember her poised smile and bright eyes in the back of the crowded room. Sophie was a talented young writer with knack for poetry. Today, her words continue to inspire.
Not too long after she came to the open mic, Sophie’s world radically changed. At the young age of 14, she was diagnosed with germ-cell cancer. The next 10 months of her life would be her last. After a heartfelt battle, Sophie passed away in August of 2013.
But Sophie’s work and words did not end there.
Thanks to the vision and strength of her family, friends, and community, Sophie’s life and legacy are now honored through the work of The Be Loud! Sophie Foundation. This charitable organization seeks to support adolescent and young adult cancer patients and their families in our community at UNC Hospitals. In addition, the foundation specifically works to fulfill one of Sophie’s last wishes, “to help young cancer patients stay true to their authentic selves in the face of overwhelming illness.”
Be Loud! is telling a powerful and necessary story. Be Loud! is shining light on the beauty, the courage, and the resilience within life’s greatest conflict; the struggle between life and death.
Hospitals are often seen as sad, sterile and depressing places. We equate them with sickness, suffering and eventually death’s final note of silence. This narrative is sewn deeply into our collective understanding. Our fear of death propels us to simplify and dehumanize this complicated and multi-dimensional struggle.
I’ve spent a lot of time talking to doctors and patients. As a storyteller and freelancer, I specialize in documenting this dynamic and universal relationship. The doctor-patient relationship gives us a glimpse into the intricacy and beauty of the human condition. This relationship provides a point of understanding and a crucible for exploring our deepest and most intimate human emotions, experiences and battles.
Just as hospitals are often simplified as places for death, all too often the idea of conflict is over-simplified as only suffering and despair. In place of this one-dimensional narrative, I like to view conflict as a prism. Conflict shows us an incredible range of human potential spanning from the absolute worst in humanity to the absolute best. We see everything and from destruction and sorrow to vivacity and resilience. Conflict is both beautifully human and inescapably complex.
Be Loud! is asking us to value this complexity and to help young people cherish their lives, no matter the diagnosis. Be Loud! is asking us to boldly celebrate life and to honor the struggle and resilience of those affected by raising our collective voice in support.
Yes, hospitals are a place of mourning and death. But they are also a place of life, strength, and hope. The Be Loud! Sophie Foundation is making sure this hidden truth shines bright in the eyes of young adults who find themselves facing life’s greatest challenge. Organizations like this are helping young folks in hard situations thrive and be their full, inspiring, and authentic selves. I am in awe of their strength.
I had the honor of performing some poems at a recent event the foundation hosted at Cat’s Cradle in Carrboro. In that moment, I stood before the crowd, rattled my vocal chords into a microphone, and repeated Sophie’s words.
“…Be loud
And move with grace
Explode with light
Have no fear…”
Like many others at UNC Hospitals today, Sophie’s story is one of resilience and courage. Sophie’s story asks us to look deeper and to challenge our simplistic understanding of conflict and death.
Before I finished my poetry set at the Be Loud! event, I looked out into crowd and saw Sophie’s father standing to the side. He had a poised smile and bright eyes.
Today, Sophie’s legacy is alive and thriving in our community. I will always remember her potent words. I encourage us all to say them aloud and take them to heart. Let us be loud and continue telling this complex and courageous story.
Will McInerney