Last Sunday night I lay down in my mediation spot to do some meditating before bed. Theres a HUGE array of them online so I usually pick one that feels good to me in that moment in time. I had been pretty flared up most of the afternoon thanks to a poor decision on my part compacted by me hitting my foot against my wheelchair and I had been trying to ride out the best I could by keeping busy: watching six feet under, doing a hair mask to help my poor angry hair, putzing around online, and eating something sweet to trick my brain.
So when it came to taking some quiet time for myself I found a meditation online about radical acceptance of pain and thought “Ok perfect”. I lay down on the giant pillow on the floor with my equally giant dog next to me. The mediation started:
“Any physical suffering that presents is pointing to resistant and offering an invitation to realize, surrender, and allow. we cultivate radical acceptance to pain by relaxing our resistance to unpleasant sensations and meeting them with a nonreactive awareness.“
The meditation invited me to relax my whole body, part by part but then immediately had me focus in on what was hurting. As I began to focus on my left leg/foot, the pain rose up like a wave of fire (because CRPS is a disorder of the brain, focusing on the body part or even seeing pictures of the body part affected can make your pain worse because of how it stimulates your brain to begin overproducing nerve sensations… I know its nuts) The meditation asked:
“Is there an attempt however subtle to push the pain away, to cut it off, to block it, too pull away? Is there fear?”
And just like that the fat hot tears began to roll down my face tracing their way down until they lay upon my neck.
I can try to pretend that there isn’t but the truth is that I am terrified of my pain still. This seems such an odd idea given how I am in pain all day but that pain especially when it kicks up to an 8 or higher is absolutely horrifying. Your brain becomes anxious, there’s absolutely no way out of your body, your mind becomes a cycle of “How can I make this stop? What if this is how it will be from now one? How can I make this stop? Oh shit oh shit.” It is bone chilling to not be able to escape you body when it is malfunctioning beyond your wildest nightmares.
Even when the pain isn’t severe I still worry “What if I don’t ever get better? What if the CRPS spreads? What if the Lyme comes back out of remission? What if Sean leaves me for someone who isn’t sick? What if I never drive or work again?”
The meditation continued:
“A full healing presence involves openness and clear contact with whats happening. To establish openness imagine openness you might imagine a great clear sky and let the mind mingle with the vastness”
As much as I could I tried to stay there in that room on that floor, picturing a wide blue sky, a great openness vast above my head. I tried to stay in my body, I really did.
But I couldn’t.
I began to cry harder. The fear overwhelming me and my leg and foot feeling like an electric boa constrictor was wrapping itself tightly around me. My big silly dog lay his head on my chest with his sweet knowing way, the weight of his head allowing me something else to try to focus on. In that moment I knew how much I still run from my pain and try to hide from my body. I stay on my computer reading other’s word and liking other’s pictures. I watch TV shows or documentaries. I knit myself into oblivion. I text my friends. Anything but being still inside myself.
I wanted to continue the meditation but my tears pulled me from this woman’s voice. The fear was too big and my pain was so sharp. I kept begging myself to just LISTEN, LAY DOWN, STOP CRYING, DONT MOVE.
I gave up.
I wanted to power through and somehow feel some sense of accomplishment or maybe some relief of the anxiety surging through me.
But I couldn’t.
I got back into my wheelchair frustrated, wiping my tears with the backs of my hands. I felt utterly defeated. I try so hard to be big and strong and to shake off these many months where things felt incredibly hopeless. A new house, new beginning, new treatments in the distance.
That meditation has haunted me day after day.
I wanted a “redo” but I felt scared to open that door back open and scared that my pain would rise up again as I focused in on the the parts of me that hurt. It made me think of how often I still want to “check out” whether it be knitting, watching tv, reading pop culture articles online, etc etc. It is still hard for me to sit still without something distracting me. I find myself not wanting to do mirror therapy or my graded motor imagery app because it FOCUSES in on whats wrong and Im scared of that.
I know there has to be a place in-between where you can be still and be “ok” with whats going on in your body (or life) while still wanting things to be different. I HAVE to find peace that I am dealing with severe pain that has made me disabled (really hard for me to type that still) but I also can FIGHT to not have this be my forever.
A few days ago I cried really hard about being in my wheelchair for my brothers wedding. The thought of being wheeled down the aisle, of being in all the photos, of not being able to dance with my husband. It all felt so horrible and upsetting. I cried and kept saying over and over “I didn’t think my life would ever be like this.” But in that place of radical acceptance I know that the wheelchair is the ONLY way I will be able to attend this incredibly important event. I have to accept that and I will do so because really I have no other choice. I am lucky to have a way of getting where I want to go.
This place of radical acceptance of my pain and my body as is can be really f***ing hard to find some days but I know I can find it.
Today I will do my best to accept you pain. When I cannot I will try again tomorrow.
“Fear is a natural reaction to moving closer to the truth”