When life hands you lemons, make lemonade.
We’ve all heard this saying before, and likely did a collective eye roll when someone gives us that advice. But I want to share a story about some people who are masters at making lemonade.
I’ve shared stories of my daughter Emily before, and her pain condition known as Complex Regional Pain Syndrome, or Reflex Sympathetic Dystrophy or Reflex Neurovascular Dystrophy.
Those are fancy terms that mean she, and so many other people, suffer from a nervous system condition in which pain signals are on the blink. In a non-scientific explanation, her brain is getting pain signals constantly, interpreting every sensation as one of pain.
It’s a hellish life, filled with inexplicable agony and all the trials and tribulations that come with it.
Years ago, we attended a camp in Kentucky for other children who suffer from the same condition. We met a whole new family — a nationwide network of other people who “get it.”
And the past few weeks, we had an opportunity to reunite with many of them.
The U.S. Pain Foundation, through Casey Cashman and her son Tyler, 16, arranged a conference and retreat for “pediatric pain warriors” at Disney World Nov. 9-11. And Tyler, through a fundraiser he started called Points for Pain, raised thousands of dollars to make this happen for families.
In fact, in 2014, he was honored by the New York Yankees for his charity work.
The conference was held at the Coronado Springs Resort at Disney World. There’s a huge lobby with a fountain at the center of it.
This is where these pain warriors found their smiles again.
They were sitting around the fountain, starting conversations where they’d left off, in some cases, years earlier. Sure, they were talking about Pokemon and video games, but the conversations were so much different than those of others their age.
“That’s a cool wheelchair!”
“Wow, I never thought of putting lights on the wheels!”
“Oh, wow, I love how you decorated your cane!”
“You’re walking! That’s great!”
Hugs. And tears, but these were ones of happiness for a change.
These young folks just want to be normal. And in this crowd, they were.
Casey and Tyler had “swag bags” for the participants, Disney-related items along with ice packs, fidgets, hydration packets and more. The bags were perfect for hanging from the backs of wheelchairs while the families visited the Disney parks.
There were speakers lined up for the adults and for the younger folks. Emily came back from her session in tears. Their group confided in each other, spoke in front of the room full of others who shared the same challenges. She was crying from the shared emotion and catharsis.
The conference gave parents and children so many things, the most important of which Emily summed up: “Hope.”
This pain condition is often referred to as “the suicide disease” because so many teens who suffer from it kill themselves. Gatherings like this one by the U.S. Pain Foundation remind these young folks that other people understand. They are not alone.
Emily said this event breathed life back into her.
And it renewed my soul.
In my opinion, every person who is feeling a sense of hopelessness in today’s world should spend time with a group of chronically ill children. Their spirit, tenacity, resiliency and sense of humor are humbling.
What these children face in a day is more than some face in a month or even a year. But still, they persist.
They function at a level of pain that most can’t imagine. And often, they do it with few outward signs of the internal struggle that is their life.
And they continue to make lemonade.
Photos from the Disney conference and experience can be viewed on social media by searching with #PPWDisney or #USPain
The U.S. Pain Foundation’s webpage is uspainfoundation.org
(Schellhammer is the Era’s associate editor. She can be reached at marcie@bradfordera.com)
