MY BODY IS A WILDERNESS…
An essay on self-care as a choice, even in the most painful of circumstances.
“Physical pain has no voice, but when it at last finds a voice, it beings to tell a story…” says Elaine Scarry in The Body in Pain.
I ask people with illness what it feels like to live with daily pain:
“I feel nauseous, sunken, achey in the joints, and foggy…”
“…every step I take feels like I’m dragging my tired, aching body through quicksand…”
“I feel like a voodoo doll, as if each side of my stomach is being stabbed with knives…”
“It feels like a battlefield, and the enemy is winning.”
I collect voices and type words from within one large room. It’s my bedroom and office and reading nook and dining/restorative space, altogether. I type from a faux leather reading chair that nestles my short frame, or the heavy antique desk I saved from sidewalk ruin and named Louisa (May Alcott) and crowned with plants, pictures, and favorite stones. Outside the window, a Tree of Heaven drapes over red brick. Inside and across, my queen-sized bed is fitted with luxurious linen sheets. Right now, my sleeping angel/rascal of a lays dog atop. Dim light. So many sounds: door buzzers, locks changing, whistles, wheels on concrete, street chatter. No sound within this room additionally adding to it.
Where does my pain story start today? I don’t know what you might have read of me already.
The sound of a plane flying scrapes against the inner right frame of my brain. Air presses down onto my frame. My muscles, joints, skin… all throb, pulse. Press a button and I could collapse, only a sack of skin, a sleeping marionette….
I am lucky.
I get to work! (Many in my position can’t.)
I can walk! (When this all started at age twelve, I sort of couldn’t.)
I love my four-walled world!
I only allow soft textures inside here. I intentionally set those nurturing flowers and frames. I reflect on gratitude for the lambskin that cushions my bones so to not focus on their ache. I give thanks for the friends who gave it to me, too. Yes, I do the eastern/western protocols prescribed for those sharing my illness. But I also practice things that support my mind and heart. I breathe care, now.
I have to for the sake of my body’s story.
But I didn’t always.
I spent a Year going without things I didn’t want to go without. Social media. Shopping. Sugar. Etc. First, I railed against feelings I couldn’t quick-fix with those habits. Then, I learned how to better choose things that are truly good for me, instead of them. It works, this going without thing. My inner lift changed. I’m a calm person. A happy person.
But some days, I feel like I’m failing anyway.
That’s why I’m introducing myself to you in this way, today.
You’re probably here because you know I’ve written a book about self-care.
But today I feel a little vulnerable. And afraid.
I can’t control pain that happens because of variables still unknown. I can’t control all variables with my work, finances, and health that already combine in a sometimes tempestuous crucible. I can’t control where my loved ones are on their emotional journeys.
But I can continue to make choices that nurture my body through the pain. I can reach out to friends for job leads and emotional cheerleading. I can be there for my loved ones. I can get over my fear to share this and offer you a space to share in return.
And so, I’ll keep doing that. One choice at a time.
I will choose the story. I will change the genre. I will shape the narrative.
So can you.
Thank you to those in my chronic illness community who filled out the survey, “What My Chronic Illness Feels Like Right Now,” some of whose answers are included here. Others can be found in Chapter 2 of The Me, Without. xo
This essay is from my October ‘18 newsletter, where I share something to read, what, listen to do, and undo every month. Join the list by subscribing at www.jacquelineraposo.com.