I used to be very grounded in my body. I was a dancer, an artist, with big expansive movements, carefree in my expectation that my body would do what it asked without complaint. The first thing people would comment on upon meeting me was the grace in my movements, despite having had very little formal dance training.
It’s not been easy. I am nowhere near the kind of dance that Loolwa describes in her work (oh, how I wish I were in Southern California this week, so I could take her new class!). I spend most days curled in a comfy chair, trying to find mindlessly repetitive ways to distract myself from my screaming nerves. But in those odd moments between where the pain subsides, I can move, and have learned some things about how to move safely and with less pain.
Very small movements, or even just holding a position, can be as useful as large repetitive motions. Even just shifting your attention from one part of your body to another has an effect – for example, from one hip to the other and back as warmup for actually moving your hips, or to see if your hips can actually move that way today.
Trembling in a given position usually means that your core muscles, the ones you usually don’t notice, are working. These muscles are essential to support everything else, and can sometimes be worked without pain even when everything else is hurting.
Listen to your body. It will tell you when something is about to hurt, and that is when you should stop. The hard part is that especially if you have ever been able-bodied, chances are you have been socialized to believe that pain is something to be pushed through, conquered, beaten down.
When you have chronic pain, the opposite is true. It will do no good to inflict punishment upon yourself. Your pain is not the workout aches able-bodied people experience that tells them their muscles are getting stronger. If you listen to your body, and stop before your pain worsens, you are not being lazy or weak, but wise and adaptable.
Inward awareness is very difficult when you have chronic pain, but essential to cultivate. I practiced yoga and meditation regularly before my accident, but since then it is much harder, because all my mind wants to do is flee from the pain, cut itself off from the rogue nerve signals flooding it constantly.
And sometimes that’s what you need to do to survive, but there will be times when the channel is less clogged, and you will learn to filter. Even if only your left toe doesn’t hurt, you can focus on that, and over time it will get easier.
Variety in your movement can drown out low-level pain. Even before my accident I gravitated towards dance-related exercise – figure skating, belly dancing, yoga – because the artfulness of it distracted my brain from the monotony. Thinking “oh, what if I do *this*?” or immersing yourself in the music can, if nothing else, just get your mind off the pain for a while.
Mental exercise. When it really does hurt too much to move at all, you can do things in your head, regardless of whether you have ever been able to do them in real life! I like doing Olympic-level gymnastic and figure skating routines. I’ve gone skiing in my head, hang gliding, skydiving. This is also useful for calming a hyperactive brain before sleep.
This is HARD WORK. Even if all it looks like from the outside is you lying there, learning to negotiate the storm of pain signals and relearn everything about how your body works, controlling a new form of mind-body connection, all of this is very hard. The mere act of co- existing with pain takes energy. 99% of physical therapists and bodyworkers will have no idea what it is like.
Have faith in your own experience. Doctors, therapists, friends and family will all try to tell you how to deal with your condition.
Everything from “just take it easy” to “just try harder” to “you’re just looking for attention.” (The keyword “just” is a great indicator of these malevolent vipers in helpful form.) They are not in your body, they don’t know what you feel, and they have no right to impose their opinions on you as a higher authority than your lived experience. You and you alone know what you feel, and what effect a given movement is likely to have on you. Trust yourself.
Heather Freeman is an artist living in Missouri. She blogs at The Living Artist, about her art, her experiences with chronic pain, and her work with online social justice communities. In her free (ha!) time, she chases after her three-year-old and despairs at the state of American politics.