Pain is a demon. It has a mind of its own. It possesses me with talons embedded deep into my shoulders, back, and thighs. Sometimes my arms or my feet, my scalp or the muscles between my ribs. Sometimes everywhere at once.
I try to exorcise the demon in the ways the churches of medicine, spirituality, and self development tell me to. It stubbornly refuses to let me go.
I change the way I eat. I hurt.
I relax my parasympathetic nervous system with naturopathy, massage, acupuncture, and Reiki. I hurt.
I take all the supplements – tart cherry and cbd oil, curcumin and probiotics. I hurt.
I take two medications – one that somewhat lessens the pain and one that allows me to sleep. I tried several others with no success. I hurt and sometimes I still don’t sleep.
I move. I work full time. I do yoga, swim, and/or walk at least a mile every weekday. I hurt.
I don’t work. I don’t exercise. And I live from my bed for months at a time. I hurt.
I accept my pain for months at a time and and then I battle with my pain for days in between. I hurt.
I grieve everything. I make peace with my crazy mom and her awful death. I process All. The. Traumas. I hurt.
Pain is eating everything precious to me.
My friendships and sense of community – nibble.
My sex life – gobble.
My creativity – slurp.
My intellect and memory – gulp.
My capacity to work full time – crunch.
It’s like a vampire, sucking the blood and marrow out of my life.
Pain is not my messenger, my teacher, nor a source of my power. My power is to keep pain from descending like an impassable fog, dimming everything in its path till there is nothing left except me on this mattress smoking weed and scrolling Facebook.
Pain is not a result of my lack of emotional healing, nor my rebellion against fundamentalist beliefs regarding health and wellness.
I am possessed by pain because my body has its wires crossed somewhere between my brain, my nerves, and my muscles. My mother’s wires were crossed, too. And while we know there are genetics involved, the environment is a factor, and trauma has its role, it is also a mystery.
Medicine thinks it’s smart, but when it takes 10 years for doctors to diagnose you with a hormone condition that up to 10% of women suffer from, you realize that they don’t know very much at all. When it comes to the education of the body, humans might have graduated from sixth grade when we decoded DNA, but we still have a long way to go to fathom the complexity of the body, all of its systems, how they interact with one another and the world.
Until science learns to exorcise the demon of pain in its countless forms I have to share my body with it and use my power to “manage” and keep it from taking complete possession. To tell me otherwise is to dishonor my experience. To advise me to try all the things before knowing what I’ve tried is to dishonor the reality that I already have tried most and it makes little difference in the long run. Many with this and other conditions will tell you the same.
Pain is a demon that rages through the body the same way that a hurricane is a force of nature that rages through our landscape. This life has no fixes or solutions because there are too many systems for one solution to fix everything, or even to fix one system without awful side effects for another. It is a mystery of interdependence between more systems than our minds can imagine at once, which is why there are hundreds of different sciences to understand them. It is arrogance to believe we have figured out much of anything at all, let alone that you may have the answer that will fix me.
If you want to show you care to someone who lives with chronic pain (please, please show us you care) – hear us, witness us, heart us on social media, reach out to us, hold space for us, and sit with the discomfort that some pain cannot be fixed by medicine or prayers, somatic therapy or a strong community of care. Some pain cannot be fixed at all. Trust that we know ourselves and our ways of keeping the pain demon from taking complete control. Be willing to make plans with us and to make space for us to reschedule because we don’t know which days the demon will scream through our cells and which days it will whisper. Be willing to write personal messages and make time to meet with us on video or visit us in our homes so that we aren’t completely isolated with this monster eating our lives away. Help us keep the demon from possessing us completely.