a curriculum of pain

I have lived within the companionship of pain all my life.

Pain has, and continues to be the teacher that takes me to, into, and through everything that matters most. My pain teacher has brought me home, and keeps showing me, over and over, just what looking after a hard won home address entails. Not a destination, though not, entirely not one either.

Please forgive the riddles – if you read my scribbled life you already know how I love the poetry of riddles. If you are new: welcome. I am happy you came. Maybe you enjoy your own riddles?

I have written about pain in different iterations, and of course this is a clean page I step into – in real time and without a real plan. I don’t mean without thought, just that I bring intentionality alongside trusting my words to find their own way. It’s how I write, and in so many ways, it is also how I live. Intentionality alongside trust. The architecture of my home address.

Once upon a time, and for a long, long time, I just couldn’t, wouldn’t, and most certainly shouldn’t, have been within a cat’s whisker of heading up an essay about my enduring and intimate relationship with pain. The shouldn’t is the crucial word here. Shouldn’t is the code word for shame. Now I am kind of shameless – not a ‘shameless hussy’ – more simply an undefended human. So much shame has fallen away. Shame has so much to say about okay and not-okay, mostly the latter. Shame takes us humans prisoner. Shame is Gautama Bay with a free rein on cruel and unusual punishments, no holds barred on brutality and torture. Shame also depends on linear construction and form to operate. There has to be the possibility of ‘okay’ often attributed with impossible ideas about success, perfection, all manner of magical landscapes that truly don’t exist.

When I speak simply about ‘falling away’ it makes something sound easy. There is an actual easy in it, but getting to the easy is a hardass and devotional long walk. As I wander across this page an old haiku that flew in during 2018 returns unbidden. Of course it does, given that it says everything within the exquisite miniature of its artform.

Keeping hold of faith
Not really. Faith moves through me
like it knows the way

My pain curriculum only makes any kind sense below the normative of binary human life. It is true there is an arc shape to being a person, the thread between the first breath and the last. There are natural developmental transitions and something like chapters that occur in that human arc. I am circling how the true in that arc has been forced into an often invisible ‘to do life’ list, that then insinuates as a metric to measure winning and/or losing.

Over time, and with the love and generosity of many, the alchemy of incomprehensible persistence in, just, well, continuing – for lack of a better word, has it seems, pulled the rug of linear life out from under me. I didn’t decide to relocate, but I won’t outsource the longing that propelled me. I won’t disown the many micro breaths of saying yes, the saying yes that is actually a river moving through the physical substance of having a body to live a human life in. Nothing is ever fully still between those first and last breaths.

I have found myself strangely preoccupied with grasping that. Even for me in the wild west of non-binary co-existence of everything, I get caught in ideas about a difficult day, or a difficult multiple of days, being a thing like a parked car. I’m having a difficult day is not a foreign country, and when I box myself in without even meaning to, I forget both difficult and delightful days are moving through me, and that life itself is motion.

I really don’t know much about what measure of pain or not pain my physical body experienced over my first three decades. I am not talking in metaphor here – I mean I literally don’t know. My body had an entire experience that I did not feel. I was in unspeakable pain, and in the benevolence of hindsight I am pretty sure my body was suffering too. I just did not experience nuts and bolts physicality in my body, in real time.

I am also perplexed by where I was, again through the hindsight lens. I existed within the constancy of emotional and psychic pain so visceral, and yet weirdly located within a disassociation and absence that the only word I can trawl up now is separation. I lived inside the pain of separation.

I’m going to say that again.
I lived inside the pain of separation.

The truth is always simple in distillation. There is a price to pay for vacating my physical form for so long. I simply let anything happen to it, adjacent to utterly abdicating any kind of basic maintenance. The resilience and persistence in my psyche mirrors the survivalist of my battered body. Sometimes a wave of love, grief and gratitude can bring me to my knees. I really shouldn’t be here to tell the tale just in terms of body narrative.

I let anyone do anything to this battered body for a very long time. I did not know I needed and deserved protecting, or that I could offer that to myself. The endpoint of childhood, such as it was, aged thirteen, across the arc to my thirtieth birthday, well, so much unspeakable carnage. All the things that happened while I was there, yet unequivocally not there. Not feeling anything in the substance of my body. Even now, even after so many years of following the breadcrumbs to a derelict home address, the courage and effort required to resurrect, rebuild, finally take up occupancy in my own boots and heart… yes, even now with all that, I will still catch a glimpse of a frozen moment. They seem to come from nowhere in particular, just arising like a still photograph that shows me so much younger, so completely lost, in a freeze frame of an atrocity happening to the body I couldn’t feel.

Those moments make me weep, and I yield to grief; I’ve come to understand and trust that grief always knows the way.

Me now, turning sixty-eight in October – I’m going to use linear so I can be simple. Choosing to stay in the world and learn how to be a person, however that turn happened so long before it made any sense, it was also the doorway into being a body. Physical pain was waiting for me, and really how could it not be?

I no more landed in instant embodiment than I arrived fully formed in the fluency and flow I now inhabit. It’s all a process, long walks, loops, traps and lessons (thank you, Kae Tempest), defences, resistance, falling apart, getting up again and finding a difference happened, that something moved, almost never what the story had predicted. I believed I’d returned to body long before it was remotely true. We are creatures of story making and we use this normative language of words to make sense, to make meaning, and to make connections. I think we mostly forget that for every human the first language has no words. Our baseline mother tongue is physical and sensory.

I love words. You probably noticed that. I do. I love the sensuality of words… and, I can see that I used this language to help me get back to that place below all the words, through the words backwards into remembering myself in a body. It was not one moment. Many small cracks that opened because I didn’t give up staying – and the staying is not a parked car, it is motion happening. It is the subtle movement of human life breathing itself into and out of our courageous respiratory system. That weirdly simple thing is what I have learned to keep staying with. It’s all going on at once, it all matters, and if we try and solve ourselves like an equation we are likely to suffer.

I am taking a moment to notice what is happening on this page. I thought I was going to tell the story of how physical pain wrote itself into the roll of nearly thirty-eight years since I decided not to die. It does have a storyline of course. Some of you know it because it has been written before, included and woven into my comedic, some poems, a few postcards from my little life.

It would seem not so much in this one.
Me. Here. Living in the constant beat of hardcore physical pain and disability. I mean going out to play has been an increasing palaver over recent years, and now to be simple, I just don’t get out that much. I do when it matters, and I have acquired a mobility walker with a seat that is peridot green and sports a few feathers.

Earlier versions of me would have needed to make all this into a very sad song, maybe one of those country and western desolation songs. What can I say, except it just doesn’t roll in that frequency anymore. Even if I put my mind to it I cannot muster up a tragedy.

To be clear, I do, do sad. When sad is happening I am able to mostly put out the welcome mat, to open up my arms. Sad is not bad, it is simply sad, and to return for a moment to the linear impossibility of okay/not okay, in my fields of kindness, the fields that caught me when I fell, there is no longer a structure in which okay/not okay can exist. Again, it was not a decision, it was a fall. I was lurching towards that fall for sure. That is mine. My longing to not live in the pain of separation that walked me over the edge.

Truth be told, I don’t live in separation anymore.
I live with the close company of physical pain. Constant. Real. I’ve had some surgeries and stuff, but actually last year I was signed out of the NHS Orthopaedic team I have been tangled with for so long I lost count. They signed me out because there is nothing else in their speciality that could be helpful. A very straightforward medic told me simply in that last appointment that the rest of my life will be pain management.

I am right here on this page in this moment, just flooded with gratitude for the freedom of my well earned home address. As Leonard (man not dog) would say: Hallelujah. Even fucking hallelujah.

The critical difference between linear and non-binary is cradled in the word ‘everything.’ Everything is one of the most prosaic and sublime words. In everything it all happens, the beauty, the horror, the unbearable – in that word everything, the whole of humanity sits. Our own personal little lives, woven into, if we know it or like it or not, the fabric of all the other humans. We really are in it together, even though there is incomprehensible violence and division running riot and so many tales of the opposite.

My take on: ‘the rest of your life will be pain management’.

I have a lot of capacity limits – within those limits I continue to find and lose again, freedom and space. I forget and I remember again, each time, same, same, different, because of that being in motion thing, same, same will be new each time.

I also take a significant quantity of medication, and life blessed me well over thirty years ago with the most wonderful human being of a GP – we have gone grey together – she has been by my side every single step of the road. Her specialism is her commitment to being relational with every single ‘patient’. I love her, and in a most appropriate way I feel her love and care for me. That sits in a depth hallelujah of gratitude I can’t measure and wouldn’t try to. She has been helping me negotiate the sometimes edgy business of ironically finding that long after my love affair with the opiates that felt like being perfectly nowhere, was over, having to come back into engagement with my old friends through a different doorway. That, dear reader, is not nothing.

The short version would be that over two decades back when I first needed to take an opiate for real embodied pain, it did include a side effect of taking the edge off stuff like being sad. Taking the edge off akin to a really good glass of wine. It softens and relaxes. It does not make you drunk. Full disclosure, I didn’t mind that.

It has been a lot of years since that happened.
All the neurological vectors have recalibrated. There is no more softening and now I am taking a lot of opiate via slow release patches and breakthrough pain orally. It all does absolutely nothing apart from its job. It is holding the reality of constant acute, in a place, a kind of register that means my life is not exclusively pain screaming in protest. It does that as long as I don’t breach my capacity, which of course I will and do, do sometimes.

I’m very fluent in living with my pain, and yes, it is a relationship. As such it is not a parked car. I keep on learning from my pain tutor, and I know I will continue finding, not answers. It is not that kind of teacher. No exams. No pass or fail. No metrics whatsoever, just my lived curriculum within pain that refuses to quit on being more than the one and only thing.

I am reaching the conclusion of this particular Postcard, and have to say that while writing me, does show me things, and is both relational in the constellation of me, and with any other human being reading me, this one is so alive in the writing and noticing. I hit the page yesterday, directly from closing the zoom with my exquisitely not therapist shaped therapist. I just rolled the connection and discourse with this woman that knows me inside out, has walked so steady and with so much kind over a lot of miles and years, directly onto empty pages in a word document. I’m still talking to Joanna, to my own sweet self, to the world that I love, and directly to you if you are here.