Listen to “Autoimmune,” read by the author.
I am my own worst enemy.
Caught in the grip of a familiar fatigue, malaise and pain, I struggle.
My body fights itself. Joints stiffen and twist of their own volition; muscles tire without exertion. I am exhausted but cannot sleep. There are drugs to take, and these have their own terrible consequences. There are also terrible consequences, says a doctor who should know, from not taking the drugs.
I am trying not to be depressed. I ponder the wondrous paradox of the lotus, that flower which emerges pure and jewel-like from the muddy muck. I attempt to extrapolate analogies from this.
I make lists in order to focus. What can I do? I can be cheerful with my family. I can do my best to keep things running in the house, even when I am exhausted. Put on a load of laundry, clear a single table, open mail, prepare a shopping list. Eat well, hydrate, stay limber. Be hopeful. Be a good friend. Send an email. Read. Write, a little, even if my brain feels fogged over.
Then a day comes when even reading is exhausting. What then?
I try not to panic. I look for wisdom. I want to be the lotus.
To live, says the Buddha, is to suffer; suffering is caused by desire; desire can be overcome. Overcoming the desire is embodied in the Noble Eightfold Path: right view, right intention, right speech, right action, right livelihood, right effort, right mindfulness, right concentration. I recite the Eightfold Path as I ride the stationary bike, the only exercise I can currently do, because it does not require being upright. Breathe in: right action. Breathe out: right livelihood. In and out, down the list, and then back to the beginning again.
Days pass, though, and I have barely risen from my bed without fatigue and pain, and so the fear comes anyway.
“All shall be well and all shall be well and all manner of things shall be well,” is the prayer of Julian of Norwich. It is presented as a meditation in a book about living with illness, one of several books I read for inspiration, or out of desperation. Unfortunately, I know this mantra to be untrue, and I’ve never been one for wishful thinking, nor do I think I will come to Christ, or anybody else, and be healed. Sometimes things are well and sometimes they are not, and sometimes I am not well. That is simply true.
Still, on a good day, I rise and I breathe. I work, and though I return to bed at day’s end, this, I tell myself, is a victory. Yet I chide myself when I see others more energetic than I am, achieving and moving and shaking; I am filled with self-recrimination. Why cannot I just get up, get moving? Why can’t I sleep? Why can’t I run? What if I just try?
So, try I do. The trying lands me back in bed, though I thought somehow this time would be different. So the cycle goes: increase the exercise when I am feeling better, stretch out the distance, move the body a little further, a little harder. Some improvement. I chant. I think positive thoughts. And then, steps backward. Two days up, pushing myself a little harder can mean one or two down. Finding the sweet spot is tricky.
Go back to breathing, to a mantra, and when one mantra doesn’t stick, try another. “Om mani padme hum,” chant the monks, but I hyperventilate when I try, panicking again.
Eliminate gluten. Eliminate corn. Eliminate soy. See a doctor. See another doctor. Take steroids. Stop taking steroids. Eliminate alcohol. Bring back alcohol. Take a sleep aid. Stop taking a sleep aid. Stop taking the drugs, because the doctor who should know was probably wrong.
I walk to the corner. And back again. Once more. I try. Once more, I breathe, I stretch. I try to sleep, to eat well.
In the trying, I am frustrated, and in the frustration, I fear, again, that I won’t rebound; that the spiral of illness goes downward forever. And I feel shame. Why am I not stronger? Better? “Be here, now,” I say, another mantra, but I don’t want to be here.
I try once more. I breathe. Some days there is only the trying, and the breathing. Some days that is all there is, and some days that must be enough.
Adrienne Pilon is a writer, teacher and traveler. Her work can be found in Scary Mommy, Full Grown People, The Furious Gazelle and elsewhere. She currently serves as associate editor at BoomerLitMag. She lives with her family in North Carolina.
Wow. So good.
This. So much this.
If I were to write about myself, this is how it would read.
Thank you for showing me there is someone who would understand.
I’m glad you read this, and felt understood. Thank you for commenting.
Such a poignant and admirable human-trying to heed all the well meaning and yet inadequate “wisdom” sent her way. Her voice is so compelling. Thank you to Blanket Sea for giving a forum for this important voice.
Thank you for saying so!