PSC is a rare, autoimmune, non-alcohol-related, progressive liver disease. PSC occurs when the bile ducts inside and outside the liver construct, building up bile within the liver. This leads to liver fibrosis, cirrhosis, and eventually, liver failure. There is no cure. The only thing that comes close is getting a liver transplant. Please visit PSC Partners Seeking a Cure to learn more about organ donation.
Today is PSC Awareness Day!
And in honor of PSC Awareness Day 2019, I’m sharing a story of a twelve-year-old boy’s powerful speech about livers, Deadpool, and hope.
PSC Conference 2018
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.
On the last day of this 2018 conference
Each of the peer groups elected a speaker to stand at the mic and share with everyone what they had 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, quickly drawing in breaths of air between almost non-existent pauses, each sentence running into the next in his elation.
“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! Basically, 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 on many people in 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 only 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 this is a story of hope
If you Google PSC, you won’t see it described in this way. If you think about the histology behind of PSC, you probably won’t think of it in this way.
And I want to encourage us to shift the way we think of PSC. No, the way we think about it won’t change its biologic course. But I believe hope can change how the disease affects our mind. Our livelihood. Our worldview.
This boy’s hope was radiating and contagious. I pray that with every thing, 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 may not be identical to his phrasing.
I’d love to continue this conversation with you in the comments!
- Do you have PSC or another chronic illness? What do you think about trying to view chronic illness within the context of hope? What helps you try to focus on the silver linings in life?
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