I traipsed through the long hallway with my large white envelope under my arm. I’m seeing yet another doctor, carrying these films that are supposed to reveal what is going on inside of me. I open the door and see several people sitting there, with their own white envelopes. They look up briefly with a silent, knowing glance. I check in with the receptionist, my hand trembling a bit as I turn over my MRI. I notice for the first time that the envelope is marked “MISCELLANEOUS.”
But this story isn’t about me. Well, not only about me.
It’s been an exciting week for The Self-Compassion Project. Ashley Hasty’s Paint the Town Purple day was a huge success. Her Facebook Status 11 hours ago read: “Thank you all, from the bottom of my heart, for your support in celebrating and honoring those with Crohn’s Disease. We had 16 photos posted from at least 6 different states! We gained about 20 new “likes” on this Facebook page and there are 150 people talking about this project on Facebook! We are definitely taking steps toward raising awareness about Crohn’s, building a supportive community, and ultimately finding a cure!”
Toni Bernhard’s interview on her book How to Be Sick and coping with chronic illness reached the most people ever on this blog. One of her supporters said it so well: “A gentle and penetrating interview in which Toni reveals again her authenticity as a human applying wisdom to a senseless sickness. She demonstrates over and over again, the profound message of acceptance by exploring its mysteries, its boundaries, its illusions and strength. As Jack Kornfield says of mindfulness, ‘simple but not easy’. We are fortunate to have Toni.”
Yesterday I wrote about cancer, and about how everyone has a unique journey in their recovery process.
Today, I’m thinking about names, and how important they are. I don’t know about you, but when someone calls me, “Barb,” I feel seen, really known. It’s a little thing, but it makes a difference. (Much better than “Hey you!”). In the same way, having a name for a condition, a diagnosis, can make people feel better. On the one hand, being told you have a horrible disease is frightening. But for the first time, you don’t feel like you’re crazy. There’s a legitimacy to having a name for your symptoms. Having a name for the problem also holds the promise of treatment, maybe even a cure. Once you have a diagnosis, you’re immediately part of a group of people in the same boat. You can rally together and be a team. And to top it all off, you get a colored ribbon!
So I’m thinking about all the people who aren’t sure what’s wrong with them. They’ve been to specialists, had all the tests, and carried their MRIs down many a hallway. I wish there was a ribbon for people like us. I even went to a paint store to look at paint chips, in hopes of finding the perfect color name for our ribbon. The best one I found was “Mysterious Mauve.” It’s a subtle mix between gray and purple. Beautiful.
Greg was reading over my shoulder and said this made him think of the song by America, “A Horse with No Name.” Yep. That’s going to be the name of this post.
Today, know that I believe you. I know you’re not crazy. Doctors do the best they can, but they’re human, too. They make mistakes. They don’t have all the answers. They don’t always have a name for what we have, but that doesn’t make it not real. As Toni said in her interview, “The single most important thing we can do is to be kind to ourselves.”
Have a restful weekend!
