Pain is transformative. I’ve spent months crying on the floor, raw as an exposed nerve as my body destroys itself. There were months when I couldn’t sleep, and now months where I can do nothing but sleep.
In the pain place I moan animalistic, like a woman in labour. At the end, at least she gets to hold her baby. I have nothing except more nerve damage, or another hole in my nose. When I emerge, I’m bleached white like the bones of long forgotten warriors, my body occasionally ticking like a car bonnet as it cools down. No tablet can contain that pain, it’s too big, too all-encompassing. My dignity can’t contain it either.
As I lay on my hospital bed feeling the pain build, I knew the pain song would come as surely as the tide coming in. A voice joined in with mine, moaning in unison, but isolated in her own pain place. I cried and moaned, shaking my hands and feet. I swallowed tablets that the pain laughed at as it possessed my body. I closed my eyes and opened them again to the pale faces and wide eyes of my loved ones. The blank, unsmiling but not unkindly faces of the doctors and nurses. Expressions that told you it was bad, but also that you were “making a scene”, making them feel uncomfortable.
This night, when the new woman they wheeled in had joined her pain song to mine, both of us were as oblivious to the restraining looks as two wolves howling at the moon.
Afterwards, when my pain started to diminish and I slowly returned to myself, I became aware that day had turned into night. I reached out a tentative toe to see if this gentle movement would send sparks of pain fireworking through my nerves, but it had passed for now.
Outside the sphere of my pain, my senses started to return. The new woman was keeping up her lone litany. Voices and words started to form meaning again. “It won’t be long now,” a dour-faced doctor said to the concerned husband and son.
Embarrassment prickled my insides. I’d been lost in my pain place howling at the moon, not bothering to hide my pain, while she lay dying beside me. Of course I’d been dying too, that’s why we were all there. But so well internalised were these feelings of keeping it all tucked up inside, with subsuming myself for the comfort of others, that my return to sanity brought with it the ingrained rules of female decorum in a public place.
I lay exhausted, face down in my hospital bed, my hospital nightie constricting my shoulders where I’d thrashed and turned, burning out my own nerves. I kept still and let the acidic pins and needles, ever present in my hands and feet these past few months, pulse their beat of life. Or was it death. Or was it all the same?
My bed neighbour sang her last note, alone.
As my pain ebbed and I dipped in and out of sleep, I heard movements from behind the curtain. Her husband appeared and said “She’s gone” to the nurse. She nodded and went into the curtained bay with him.
Drifting in and out of the exhausted place on the other side of pain and painkillers, I felt bad that their last memories of their wife and mother would be sound-tracked by my song of pain.
Fragments of conversation drifted over from behind the curtain.
“No, only her wedding ring…”
“Only two choices then… Finger… Hack it off…”
“Or hack the ring off…”
“What’s he talking about?” Said a voice close to my ear.
I opened my eyes. I couldn’t see anyone, but the tone of voice was one I recognised from my pain song. She was still here, confused as to why her husband was talking about hacking off her wedding ring, or worse.
Consciousness was fading away from me but instinctively I reached out my mind and heart to where I imagined she was and wrapped her in white light. I sent her feelings of love, safety and happiness. I told her it was okay to let go and move on. As I tuned out to nothing I used my dissipating thoughts to push her on, with love. It was an instinct that only comes in those true moments of living. The white points between Life and Death. The In Between.
When I next woke up it was at the urgent insistence of the acidic pins and needles turning up the volume to Eleven and fitting a bear clamp on my right calf muscle. I realised that I’d had my only ever words of wisdom from “The Great Beyond”. The Other Side had a message for me and it was: “What’s he talking about?” It seemed somehow appropriate.
This is extracted from my memoir “Transformations” which I’m currently writing about my recent diagnosis with a rare autoimmune condition, granulamatosis with polyangiitis (GPA), a type of vasculitis, my subsequent disability and my recovery journey.