I attended a primary sclerosing cholangitis symposium in 2018, hosted by PSC Partners Seeking a Cure. During this weekend-long event, a young boy gave a short speech that changed my perspective on living with PSC. So in honor of PSC Awareness Day this year, I’d like to share the story about this speech that focused on livers, Deadpool, and hope.
What is the PSC Conference About
I attended a PSC symposium back in 2018. This annual conference, hosted by PSC Partners Seeking a Cure, is where hundreds of patients, caregivers, and supporting family members gather to meet others, learn tips about living with PSC, and hear the latest industry news. The speakers are mostly medical professionals, including researchers, gastroenterologists, dietitians, naturopaths, and more.
The conference is made up of large sessions, smaller breakout sessions for discussions, and private peer groups for different ages. The peer group sessions were my favorite part because it was a fantastic way to connect with others in your same stage of life.
The Boy’s Powerful Speech
On the last day of the event, each of the peer groups elected a speaker to stand on stage and share with everyone what they’d learned over the weekend.
I was sitting in the audience with the rest of my group when it was time for the kids and teen peer group to speak. They had elected a boy about twelve years old.
He wasn’t a shy kid. In fact, he was bubbling with excitement to share what his peer group had discussed.
“My group talking about PSC,” he said excitedly. “And then we looked out the window and saw people dressed in costumes on the street!”
The crowd chuckled but threw around confused glances, not quite sure what he was talking about.
“It was Comic-Con!” he smiled ear to ear. “There was a Comic-Con convention nearby! So our group leader took us outside and we got to look at all the costumes. And I saw my favorite superhero…Deadpool!”
The crowd laughed, slapping knees and matching his smile.
The boy, wide-eyed and gesturing to emphasize his points, began going into a full exposition about Deadpool. He chattered quickly and drew in breaths of air between almost non-existent pauses, each sentence running into the next.
“I’ve read the comic books, and he’s my favorite because he’s hilarious and he’s so cool because he beats up all the bad guys…”
Throughout the room, there were waves of laughter as people chuckled at his excitement and animated gestures. The air was relaxed and there was a general understanding that this discussion would be amusing and lighthearted.
“And I love his origin story!” the boy continued. “He gets cancer and he receives a treatment that saves his life but it doesn’t get rid of the cancer. Instead, it extends his life and gives him superpowers, but he’s still living with the disease.
And that’s like all of us with PSC. We may take medications that make our lives better, but we still have the disease, so we’re basically all like Deadpool! We are all superheroes.”
The chuckles and side murmurs stopped.
No one moved. Not one person shifted in their chair or reached for a sip of water.
Everyone stole glances at each other in silence. You could hear a pin drop. The boy, still by the mic, wore his huge smile, unphased by the silence.
And, as if on cue, everyone in the auditorium roared into applause. There were whistles and shouts accompanied by wide eyes and amazed faces throughout the crowd.
No one expected that.
No one anticipated this boy’s lighthearted chattering about a man in a Deadpool Comic-Con costume would take such an unexpected turn into the profound.
Me, being the emotional person I am, felt tears behind my eyes, and a girl across the table from me formed an awestruck “O” with her mouth and then said, “Wow. I did not expect that.”
The following speakers that stepped up to the mic after that shared what their peer group had discussed, but the atmosphere had changed.
It was apparent that everyone’s minds were thinking of that boy with PSC…
The boy who loved Deadpool…
The boy who could talk about such a heavy disease in the context of hope.
This story has stuck with me since that day, and I think about this story often.
I wish you could have been there to experience it, too. To feel the atmosphere shift. To sit in a room with hundreds of people, all equally awestruck, impressed, shocked, emotional, encouraged. To feel the profound silence this boy created by talking about this disease in a light of optimism. Of empowerment. Of hope.
Because There Is Hope
Science has come a long way and several companies and research groups doing amazing things to find a treatment or cure for PSC. (Check out BiomX and my PSC Hub about the promising research about vancomycin!)
But I believe holding onto hope can change how the disease affects our mental health. Our livelihood. Our worldview.
This boy’s hope was radiating and contagious. I pray that anything, big or small, that makes our lives better—a medication, a transplant, a hug, a story—we’re all reminded that choosing to see PSC in the context of hope is, indeed, a superpower.
*This telling of the boy’s speech is recounted at the best of my ability and memory and is not verbatim.
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