EVEN AS THE SMALL ME
Threads of meaning and meaninglessness in the depths of chronic pain
A personal essay
published (with edits) 2017 in 'When Language Runs Dry' Issue 5. When Language Runs Dry is a Compilation Zine. There are 5 issues to date and they are brilliant. Find them here http://chronicpainzine.blogspot.com/
Buy on etsy here: https://www.etsy.com/shop/NeverTwice
Review on Broken Pencil: http://brokenpencil.com/news/zine-review-when-language-runs-dry/
I remember where I was sitting when I had one of those moments of clarity in which the circumstances and the elements lurking as corners and backdrops of the mind suddenly ripen to a point of connection. I was sitting on a rock, a particular rock in a pile of rocks which form a sea defence, near my mum’s house - not the rock I habitually sat on, but one further back. It was summer or early autumn. I think I had begun recording a song I was writing, but finally ended up just talking to some kind of machine- my tablet, or dictaphone. I have searched for the recording but it’s disappeared into an electronic nowhere.
I remember feeling validated by the machine’s silent acceptance of my words. I could say what I couldn't say to any human, I could talk freely, without formulating my stream of consciousness to please or entertain or not offend its specific self. And I could say things I couldn't say to myself, I could go somehow further than I could in the confined space of my interior thought process. I don't remember the precise order of thoughts evolving or what triggered what, but it occurred to me that my chronic pain was precisely preventing me from doing that which I most wanted to do, which was play music. However, before I developed the pain, I already had big barriers to fulfilling my desire for creative expression, in the form of a lack of confidence, a complex form of shame that attacked me if ever I performed. I wrote songs in secret and while I internally believed in my work, I was paralysed when it came to taking it into the world. This was a source of great frustration and drained my energy as every blockage does. I sat thinking about how unfortunate it was that now only had I one really significant barrier, but two. This created a situation in which if I was having a good day moodwise, feeling confident and energetic and not ashamed and the opportunity arose to play music, the chances that I would be in a physical state to do so were slim. Likewise I might be physically capable one day but in the grips of my shame complex. However, because I knew that I had psychosocial reasons to turn down a jam or whatever, if someone asked me to play music and I felt resistance in myself, I often pushed myself out of habit, even if I knew my body was not in a strong way. I wanted to avoid the self flagellation that would follow should I not participate, which, even when the reason was physical, automatically blamed my psychology if I didn't participate in something I wanted to. And that exacerbated my chronic pain, in a vicious cycle.
The reasons for not doing the thing I love became all mixed up, complicating any possible route through. Before the pain, I was working on my confidence, and in a process of learning self acceptance. And before my pain went into its worst phase, I had a very good phase in which I finished making a harp, and began teaching myself how to play it. I remember taking it to the beach, singing to it, hugging it between my legs and arms. I loved it. It gave me an ownership of sound I had never felt before and I knew with this instrument I could build a sound I felt was mine. With the onset of severe pain, everything collapsed in a slagheap. Increasingly I couldn't do basic tasks or look after myself, let alone the things I enjoyed. I lost my job, the roof over my head, and learnt more about the depths of intimacy to which fierce individualism reaches, and the way it disguises itself in the eyes of the independent.
As I sat and ruminated on how my physical pain and shame got mixed together in relation to performing, I discovered the possibility that my physical disability was actually caused by my psychosocial disability, along many indirect routes, all converging together in the pain. I realised that I could have been disabled in any number of ways, but this specific pain impacted music especially. I also had vocal problems associated with neck tension and pain. I realised that after my accidents I could have healed well but instead I developed chronic myofascial pain. Why?
Was it because of my posture; my collapsed posture due to low energy, due to my on and off depression? My collapse cut off circulation to my arm, and made my breathing shallow, thus starving the damaged tissues of the oxygen and nutrients they needed to heal. Or because of my damaged immune response, also related to my mental health struggles? The immune system is deeply implicated in healing after injury. Because of the way I attacked the piano when I played, the way my upper body filled with tension when I played the guitar, because of how I strained to create the right sound, out of a lack of confidence in my abilities? Because of the way I didn't trust my own body when it was hurting and refused to go home from a bike tour, but instead continued, believing that going home would be giving in to a psychological complex? How I consistently pushed through pain and could not get the hang of pacing myself to give my injury time to heal, out of fear that my good mood would not last, and that if I stopped working on my project now I would not come back to it? Because of my rebellious and passionate spirit that refused to impose moderation on itself whilst in the grip of inspiration? Because of my internalisation of clichés about suffering for art; because of the way I had stayed alive through extremely painful times through my art, and thus saw it as the most important secret thing I would never concede, more important than my health, the insistent voice of my body?
If I hadn't been a person so erratic in my moods, so prone to momentary elations followed by fatigue and bad moods, I wouldn't have felt the need to grasp joy so tightly when it appeared. I saw how the mechanics of my whole self had led to this situation, and how I would have to change my whole self if there was to be any hope to move out of it. I saw how my physical disability was in fact a precipitation of some kind of energetic contradiction that I had already been the owner of. Not, of course, the only logical outcome, but a logical outcome of the mass of things that was my life history.
Simple pain tells us simply what to do, like get our hands out of the fire, or not walk while our leg is broken. Devyn Starlanyl writes in her book 'Fibromyalgia and Chronic Myofascial Pain: A Survival Manual', that non-chronic pain is life preserving while chronic pain is life-destroying. I can definitely relate to the feeling of being drained of life by pain. But I think chronic pain can be read as life preserving too, as our bodies telling us what we need to do. However as it is more complex it has to be decoded and sometimes its messages are counterintuitive.
When we want to explain complex concepts to each other, we use metaphors, similes and comparisons to evoke the meaning that we are trying to communicate. In a similar way, might chronic pain be the way we experience the body using its own basic mechanisms to talk to us, even when its message is more complex? Might that be what is happening when we have pain that seems to be illogical, that won’t go away? And when viewed like this, as a coded communication from our bodies, the unconscious, or something outside of us, is it possible to decode our chronic pain?
Also, who is talking to us through the language of our pain? If our pain is a coded message from our bodies to our minds, from our unconscious, or the collective unconscious, to our selves, it is impossible to view it as our enemy. At the same time, if I have understood correctly that my pain has developed partially in response to my shame, a shame imposed on me by interpersonal and societal violence, do I have to befriend shame too? That is hard.
Pain as Oppressor
Shame is an oppressor, I can not see it otherwise. For me the word shame denotes a kind of fear of social punishment, fear of the consequences of social ostracization; one of the most powerful tools of oppressive systems. My shame was internalized through a combination of bullying and gendered violence that I experienced, in addition to familial shame I inherited. I can think of my chronic pain as the result of my various diverging responses to that shame, finally colliding and becoming a single entity- in the same way that literal myofascial trigger points form. This makes it essentially an internal representation of the societal poison of shame, leading me to understand the pain itself as an oppressive force too; an externally imposed, foreign thing within me that I need to overcome or expel.
What it feels like it has the feeling of a kind of anchor, a blunt metal anchor that has materialised inside my flesh, heavy and cutting and dull at the same time and dragging me down, while the people skip around the surface in their little motorboats, unseeing, and some glide by in kayaks and canoes, who see me and look at me with sympathy but cannot pull me in because they would risk upturning their delicately balanced vessels, and i can see how if they worked together they could help me, if they attracted the attention of the larger boats and somehow got them to help me, but they don't, and i’d rather if they didn't see me at all, because now i am ashamed to be looked at with those eyes as i am dragged down, i don't want those people to feel they have any power over me, i know how even the well meaning abuse power, because i mean well. So now i have stopped trying not to drown, i am willing, i want to be taken right to the depths where i am safe from those boats chopping around and those pitying people, i want either to be alone or surrounded only by people who have known the same sorrow and who wont harass and incite shame in me with their expectations, their lack of understanding, their wavering between sympathy and judgement, their pity, their rejection.
And so now how can i see the pain as my oppressor, that anchor which has dragged me down, which now holds me here at the bottom of the ocean where there is a kind of peace, although i can't breathe? Had someone dragged me up into their boat i would have said, 'look, here is this thing which is inside me but it is not me, it is hurting me, please help me get it out, the edges have grafted with my nasty scarred up muscle but still i think it can be gotten out'. Now i have gotten to the bottom of the sea, it is hard to imagine what would happen if i were able to separate myself from this thing, though how i would do that down here in the water without help god only knows; would my body, de- weighted under this water just collapse, would it float up to the surface, weak and light averse, to just drift around in the tide? I can't cut it out even if i wanted to, and yet I don’t want to accept that i am living in a deep isolation eternally married to an oppressive complex. Can the pain be something other than oppressor?
Pain as healer, teacher, pain as god
If pain is a teacher, where do we go and what do we do when we are incapable of learning, of integrating its lessons? We stay where we are, or we run away; either way, we continue to suffer. That is why so many of us suffer. There are many ways we can be incapable of changing our lives to integrate lessons in this world. Our capability or lack thereof here relates intrinsically to our disempowerment at the hands of the current global socioeconomic system. I see it as a fact that the more privilege we are able to leverage, the easier it generally will be to integrate necessary changes.
For me, my chronic illness hit at what seemed like the worst possible time: right after I had left university, and was working out where to go and what to do. I didn't have the structure of university life which provided purpose, activity, and community (if to an inadequate extent for my needs). And I hadn't yet worked out where I was going to get those things from. Had I had a clear path or structure in my life to hold together or adapt to my new needs, things would have been infinitely more straightforward. Illness doesn't choose the best time to strike for our own growth. It strikes when it can take our split selves no longer. When we have worn it down to its last nerve, I suppose.
If the forces of life, the universe and everything are what whacks us, pain is no more the whack itself than it is our bodies response to that whack. And our body’s response to that whack is our bodies telling us to move or somehow change. A part of me has come to view pain as the place where conflicting forces meet. The forces that animate the universe meet themselves in another form; a conscious form that has been intricately twisted and refined through millennia of evolution. Pain is the feeling of that ongoing manipulation; it is the feeling of a change being violently forced upon us. This change is what we are, it is how we exist as conscious beings.
“When an apprentice gets hurt, or complains of being tired, the workmen and peasants have this fine expression: "It is the trade entering his body." Each time that we have some pain to go through, we can say to ourselves quite truly that it is the universe, the order and beauty of the world, and the obedience of God that are entering our body” Simone Weil
At times I feel that the forces that are hurting me and spurring me to change are in fact crushing me, that my body and spirit will not evolve but will instead be lost under the wave; that I am inadequate as a human, and an animal, as a conscious creature to the task of survival. Sometimes I am able to console myself by connecting with a larger truth; that life is only a competition from the standpoint of the individual. I imagine that all the alternative beings that could have existed in my place in this world, the children my parents could have had, their small spirits are all part of my spirit; maybe as we grow older, we grow more conscious because all the conscious beings that die at every stage get added to us like drops of water joining a stream. The people I know who have died young, my childhood pets; my grandma; the creatures that die are not gone and have not failed at anything. So I can see that this pain is very powerful and not be scared. And sometimes I feel like I have grown, I will not be destroyed, even as an individual person, even as the small me. I suppose all of these things are true.
What is amazing is that we can sometimes even glimpse the way that our pain is forcing us to grow, as it happens; we can glimpse how our lives were not in harmony with those larger forces.
'I have heard it said that illness is an attempt to escape the truth. I suspect it is actually an attempt to embody the whole truth, to remember all of ourselves.'
Which part of myself have I somehow left behind, blocked out or forgotten? In her beautiful book, 'The Alchemy of Illness', Kat Duff relates to the reader her experience of Chronic Fatigue Immune Dysfunction Syndrome, and how she was able to draw meaning from its depths. I was struck by her account of a dream in which she realises that her exhaustion is a mechanism preventing her from becoming completely dissociated from herself:
'I had a dream the night before I received my CFIDS diagnosis and learned there was no cure for it; the dream showed me how my incest recovery would continue through the agency of my illness. In that dream I belonged to a group of women incest survivors who met weekly to blaze trails through rough wooded territory. We hung little mirrors from the branches of trees to see better and tried very hard to do it right; even so, we kept getting lost, confused, and separated, and ended up fighting amongst ourselves. Finally, we stopped and asked ourselves: How can we keep from losing it like this, from dissociating and splitting apart? As soon as we asked the question, a wise woman appeared and demonstrated a simple spiritual exercise for pulling ourselves back together and cultivating the self possession of the masters; to collapse with exhaustion. We proceeded to do exactly that, each one of us dropping to the floor with a loud sigh, then, one by one, we told the stories of our lives, our deepest hurts, regrets and yearnings. As we connected with ourselves and each other, a deep calm enveloped and united us.'
Because we rarely hear accounts from ill people of their illness, because the reality of illness is that it disorders the very parts of us that would otherwise be engaged in remembering, explaining, and categorising it,
'illness remains a wilderness....it may play an important, even necessary, role in the ecology of the whole.'
Societally, we are living in times that seek to fragment us, disengaging our energies from our capacity to calibrate and direct ourselves. Duff's suggestion that the agency of an illness itself could be what does the healing- that what we experience as the illness itself is not only what can teach us how to heal, but may be the actual healing happening- feels important. I think integrating this understanding can reconnect us to a broader sense of meaning.
As in homeopathy, a particular illness may warrant a solution that balances not only that illness or manifestation of illness in a person, but also the symptoms and tendencies they are not attempting to address, and may not even have recognised. In a larger sense, our illnesses can be viewed as the beginning of a self healing process that nature is living; our attempts to heal in a way that integrates the lessons of illness may continue this work of nature, which is correcting itself in ways and on levels that we do not have access to.
For me on a personal level, the best solution I have found for my pain has been meditation, connecting with spirituality, and bodywork. My pain simultaneously forced me to inhabit my body and the present moment, as one cannot avoid when one is in pain, and intensified my desire to escape it. Escaping the frightening vulnerability of my body is what I had been doing for years- as pain has dragged me back into it, I have had to acknowledge that leaving my body behind only leaves it, and thus myself, more vulnerable to damage. So I have to learn a new way of living, in my body. This doesn't make pain go away, but it prevents me from creating more pain by doing things that exacerbate it while dissociating. And at the same time, it brings me back to the truth of myself, from where I can act authentically and do what I mean to in the world; contribute and not blindly hurt other people and living things. I hope that it will bring me more and more fully into peace with myself and the world. I have known this flow and peace and I want to live there. But there is a lot to integrate. In order to make this kind of integration possible, we all need to plunge into the work of undoing our individualism and isolation and building true communities of healing.