Twenty-five years after recovering from brain cancer, Sheri knew that she wanted to do something tangible for the illness community. She thought back to her experience – Sheri had received the world’s best medical care, and huge organizations were already funding research that has led to even better treatments. What was missing from her care, and was still largely absent, were resources for young people struggling with the emotional side of illness.
A serious illness can force you to push ‘pause’ on life. For adults that can mean interrupting a career. But for young people, taking time to deal with a serious or chronic medical problem can mean literally interrupting the process of becoming a person. Friends go to high school and college; they create friendships and relationships; they move out into the world as independent people for the first time. For a young patient, it can be like watching a movie of what their life should be.
Sheri wanted to do something for these kids. She had, in fact, been one of these young people, herself. The result was our organization, Digging Deep. As you can tell from the name, Sheri’s vision has been to help young people dig deep into their illness experience. Whether it’s cancer, or a chronic condition, or a mental health challenge, understanding illness waters the ground from which resilience can grow.
That starting line was five years ago. Since then, it’s been like running a marathon at a sprint pace. We distributed 30,000 Digging Deep journals and then transitioned from paper to our digital game, Shadow’s Edge, which we released just over a year ago. Even outside basics of book publishing and game design, we have exhibited at conferences, spoken at pediatric health events, managed a research study, built websites, created a social media community, and fostered partnerships with people and organizations around the world.
In the rush of our everyday activities, it’s easy to forget, sometimes, what is on the other side of our journal, or on the other side of our game. What is on the other side is a sick child, teenager or young adult, who hopes that the thing he or she holds in their hands will help them feel better.
Our game, Shadow’s Edge, is not going to cure cancer or lupus or depression or diabetes. But our hope is that players who choose to enter the city of Shadow’s Edge will leave knowing a little bit more about who they are in the context of illness.
You are not alone. You are strong enough to get through this. Things can get better.
This is what Sheri needed to hear 30 years ago. We know this is what young people with medical challenges still need to hear today. Our journal and our game and our community are the ways we cup our hands around our mouths to shout these words to young people who need to hear them.
This Thanksgiving, we hope you will add your voices to ours. To all the young people fighting battles in their bodies and in their minds: We appreciate your struggle. We know you are doing your best. And we are all with you, today and every day, on this journey through illness into the person you will become.
Garth Sundem is a parent, husband, and author of books including “Real Real Kids, Real Stories, Real Change”.