This past week, I had the great pleasure of joining Cinderblocks, an annual conference put on by Regina Holliday bringing together many voices and players within the world of health care. Although I am a member of the Walking Gallery, I had not attended Cinderblocks before, and I wasn’t really sure what to expect. (If you’re wondering why it’s called “Cinderblocks,” check out Regina’s childhood story.) What I learned from this small town in rural Maryland called Grantsville was more than I could have ever hoped for. The stories and passion coming from this town— stories of hope and hopelessness, addiction and recovery, creation and sustainability—are the kind of stories that compel you to action.
This was health care around the campfire—patients and community members and local government leaders sitting together with clinicians and pharmaceutical companies and technologists—talking and listening and trying to solve the problems that we all share. (For a good summary of the conference, read this blog from Danny Van Leeuwen or this one from Open Notes.) We remembered our friend Jerry at a special ceremony on Thursday night and painted Hero’s Journey Art bricks together on Friday afternoon. We also recognized three attendees with a “Be Like Jerry” award for their passion, patience and comradery in this health care journey that we’re all on together: Mélanie Péron, Danny McGinnist Jr. and Robb Fulks.
But as memorable and meaningful as all those things were, one activity during the conference really stuck with me. An art therapist from a local hospital gave a short talk on the value of art in helping people to overcome a great many things. They’re using it as a therapy for abuse and depression and dependence, and she invited a few of us to participate in an activity. Always up for a challenge, I raised my hand and volunteered. She gave us a small box of art supplies and said to create something. The instructions were vague, but I thought about it for a minute and decided to make an origami finger fortune teller. I’m sure you’re familiar with them if you have kids around 3rd grade age. I used to make them when I was a kid, and now my kids make them, too. As the presenter continued with her talk, I got to work folding and creating, coloring and writing. I chose colors for the outside and numbers for the inside. The fortunes inside included: “A cure has been found!” and “You get a day off of treatments!” and “One week without having to talk to the insurance company!” Anyone in a chronic health care situation would love to get any one of these little “fortunes.”
Then the presenter threw in a twist: Before we had the chance to share what we had created, we were instructed to destroy our work. Confused and a bit annoyed that I now had to destroy what I had proudly spent the last 10 minutes creating, I tore it to pieces. It was hard to do! I felt sad and confused, and I was frustrated because I didn’t know why we had to destroy our work. With a pile of shredded paper now in front of me, my next instruction was to take those pieces and create something new. I tore little shapes out of the colored paper and created a sunset, with clouds and flowers on the ground, and used some pattern scissors to make grass for underneath it. By the end of the exercise I had a beautiful picture that had nothing to do with what I had created except that I had used the same parts.
This was when I had my big ah-ha! moment. When the first vague assignment was given, my mind went right to cystic fibrosis. We were at a health care conference after all! I thought I was creating something happy or hopeful with my fortunes being some of the things I most desire, but I quickly realized that my mind had still gone to CF. I was stuck in that mode. Destroying my creation was hard because CF has become my identity and I’m proud of that and have a hard time thinking of myself separate from it.
When I realized that I could use those same parts, what I had created and destroyed, and put them back together in a different way, I was able to see that there is another way. That was a gift: realizing that there is another way. In fact, during a talk earlier in the day, we heard from a recovering addict who shared those very words: “Not many people realize that there is another way.”
The exercise was incredibly healing for me and something that I will use in my everyday life as both a parent and a caregiver. That visual representation of being able to move from one place to the next without losing your whole self, using the limited supplies we have at-hand, is powerful and important and a lesson that I think we can all learn from.
As I have reflected on my Cinderblocks experience, a quote from the book The Opposite of Loneliness can best sum up how I feel: "It's not quite love, and it’s not quite community; it's just this feeling that there are people, an abundance of people, who are in this together."