B.F. (before fibro), I don’t think I’d ever once been accused of being “distracted.” I was more likely to be lumped in with groups such as the insufferably Type A, the hyper-focused, the obnoxiously prepared and intent. People who got off task were, frankly, frustrating to me. I kept my eye on the prize and I got.shit.done.
A.F. (after fibro), I have worked ceaselessly to avoid the thing that screams violently and tugs mercilessly at me. The thing that demands my focus at all moments of the day has become the thing I willfully seek to elude. Pain.
I’ve become a master of self-distraction. I crave it. I claw after it. I latch onto it often because it seems to be my only remaining choice, except for lying down and giving into suffering.
It’s why travel works for me.
New sensations give my nervous system something else to consider.
If something tastes delicious,
If something takes my breath away,
If something smells divine,
If something warms my skin,
Then I can’t only be in pain.
I must also be experiencing, exploring, touching, and feeling. I must be alive.
And it’s like magic. My frame of reference expands beyond the narrow, often lightless tunnel that is pervasive, unceasing pain, and—even if only for a moment—there is relief.
It’s humiliating and humbling and joyful and miraculous all at once to be reduced to these kinds of basic, gutteral reactions, as a crying child is suddenly quieted by a soft hand or the flash of a shiny toy in front of her face.
In the absence of travel (which is, let’s be honest, a rare luxury), I improvise. I reach for the comfort food, the piping hot tea, the frothy latte. I scroll obsessively through social media apps, as if I were close on the heels of the cure for cancer, perhaps just rows below in my Pinterest feed. I gravitate to pretty things, soft fabrics, home decor ideas, plans for parties I know I’ll never throw. I wreck my body in the yard in the summer, because the sun is shining and my skin rejoices, like toes curling into a soft throw blanket, at the feeling of heat. I spend countless moments of my life trying to make them pass, in the most pleasant and least torturous ways possible.
And I need you to know, it’s more complicated than it looks.
This is why I can spend an hour deliberating scarf colors at Target, but I can’t stand long enough to select the cleaning products I went there for. This is why I can find all the recipes, but I can’t chop the onions. This is why I can sit across from you over coffee and laugh and smile, but when I’m home, I can feel desperately alone and acutely aware of the gnawing pain in my neck, my shoulder, my face, my knees, my tooth, my jaw, my left hip, my right ankle.
This is the power of my mind and the grace of my will. I rely on it daily. Through the tool of distraction, I’ve found new focus. I’ve discovered the deep and profound meaning in that cliche phrase, “We create our own realities.”
So when you see me at the restaurant, in the theater, at your home for a visit, I need you to know it’s not necessarily because I feel better. (Although, on rare occasion, I just might.)
It’s generally because I’m willing myself to experience more of this moment—this bite of shrimp, this scene in the movie, this conversation I’ve really missed since the last time we talked—than I experience of the pain that is its constant backdrop.
When I show up, when I rise to the occasion, even when I seem like I’m on the planet of phone-obsessed gremlins, I need you to know: I’m choosing life.
And many times, I’m also choosing you.
What I need you to know is an ongoing Tuesday series written from a person with chronic illness to the people who love her, enjoy her company, and live with her (her husband will tell you: these things do not always overlap!).