by Alicia DiGiammarino

When I was still in middle school, I began coming up with creative ways to tell my mom I loved her. “I love you like Shakespeare loved to write!”,  I would exclaim, partly just to hold her in the door frame a second longer before I was left alone to drift off to sleep. “I love you like Galileo loved the stars!”, because, really, what greater love is there than that of a man who gave up his freedom for the radical notion that the earth revolves around a single star?

In college, during a deep reading of the works of Gabriel Garcia Márquez, my message took another form. “Love in the time of Ebola!”, I’d declare into the phone before returning to my books. Or more recently: “love in the time of Zika!” Or just the other day: “love in the time of chronic pain!” With this last one I hit on an intensely meaningful expression, because if my love for you is as deeply rooted as the pain I experience every day, then I must love you a hell of an awful lot.

What people don’t understand about chronic pain is that it’s not the “pain” that hurts so much, but the “chronic.” Imagine if you were hit hard on the back with a baseball bat. You would moan a bit, grab an ice pack, and in a couple days you’d get up off the couch and gingerly walk around the house. Never would you consider that this pain wouldn’t disappear. But when you finally walk out the door a few days later, there’s a baseball bat on the front stoop ready to slam you in the back and send you right back to the freezer for the ice pack. The cycle goes on like this until your frame of mind finally starts to shift from eternal optimism to complete confusion. You say to yourself, “Now what? I’m trapped.”

Your life shrinks to a fraction of the size it once was. Before, you studied long hours on a subject you loved, traveled the world, danced the rumba, and went out hiking with your friends. Now you are terrified of the constant presence of that pesky baseball bat. You are stuck living an eternal Groundhog’s Day, watching everyone else’s lives move forward through the distorted windows of your living room. You once thought that movie was a comedy, but now you know for certain it is a horror film.

Thoughts that never occurred to you before crop up in your mind, “will the bat one day make it inside the house? Will you end up confined to your room?” Your identity transforms. All of the things that once defined you are no longer a part of your life. Those times you miraculously don’t have pain feel strange. Your sense of self is so wound up with the pain that you don’t know what to do with yourself on a rare pain free day. It seems to be just a mocking gift from the gods.

Your relationships change or die trying. Your friends and family don’t know what to make of it all. They have to step up to the plate to help you navigate your new life. They have to search you out because you’re holed up, cowering in your house. You are excited to see them, but once they are inside, you find yourself jealous. How on earth did they get past the baseball bat without even a bruise? You find you can’t really hear them anyway because there is this constant thrum of pain drawing your attention away.

In Complications: A Surgeon’s Notes on an Imperfect Science, Atul Gawande (2002) says, “pain is a symphony – a complex response that includes not just a distinct sensation but also motor activity, a change in emotion, a focusing of attention, a brand-new memory.” Classical music lovers will know that a well-played symphony is an all-encompassing experience that drowns out all other sensory stimuli. If my pain were a symphony, it would be the original Symphony no. 41 conducted by Mozart himself. You can’t ignore the most famous composer of all time just because your friends are in the room.

Eventually you come to accept that sometimes, when life gives you lemons, there isn’t any sugar around to make lemonade. You add pain management to your list of skills that make you unique, even talented. You begin to build a new life out of the pieces of the old one. You become one of the millions of people who live their lives defined by a before and after moment.

I would like to say there is a pesticide on the market that removes baseball bats from front stoops. But I won’t. Because there isn’t. What I can say is that on mornings after a good night’s sleep, I eat a hearty breakfast, walk out the front door, get slammed with a baseball bat, and keep walking down the path right past the mailbox and into the world. I ask myself, “can I handle this pain today? Right now?” The answer is usually yes, so I decide to worry about tomorrow when tomorrow gets here. For now, I ask for help when I need it, laugh at things that are funny, and remind myself about the people out there who love me like Mozart loved his piano and most importantly in the time of chronic pain.

References

Gawande, A. (2002). Complications: A surgeon’s notes on an imperfect science. New York: Metropolitan Books.