Pain: A Chaos Narrative
– By Eric A. Stone
Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.
It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New Periods of pain.
-Emily Dickinson
The way in which we understand pain, as a species, is a process of learning. As Arthur Frank writes about illness, so too is pain “about learning to live with lost control” (1995, p. 30). We shudder at the thought of lost control; we abhor it. To lose control is to lose one’s ability to function in society. If we cannot exercise control over ourselves, we are unwelcome. Some illnesses and injuries, of course, are easier to conceal, to control, than others. Society expects us to hide our flaws, our imperfections, and we can often acquiesce to these unreasonable expectations. But we stare, we gawk, we notice when bodily control is lost. We treat those who have lost this control differently, because they have lost what we see as one of the defining characteristics of humanity, what separates us from animals: our ability to walk upright on two legs. “When adult bodies lose control, they are expected to attempt to regain it if possible, and if not then at least to conceal the loss as effectively as possible” (Frank, 1995, p. 31). It is silently, tacitly understood that those bound to a life without the use of their legs are deserving of one thing, pity. We immediately think about the loss of this mobility, this loss of humanity. In my case, this loss of mobility has defined who I am. This is my ethnography of pain, my embodied journey with the constant companion that has invisibly shaped my life.
I can remember the day it happened. The day it was gone. I was young, too young, to really know what I lost. I think back now, about how it was a normal day. I was a normal eleven year old. And then I wasn’t. I was running along the ramp, hopping over the side to keep up with Joe, my cousin. And then I wasn’t.
A necessary part of understanding pain is, surely, knowing how to describe it, how to explain it. To your doctors, to your family, to strangers, to your friends, you share the pain in the hope that you can come to terms with it. “The self-story is not told for the sake of description,” Frank (1995) writes, “[t]he self is being formed in what is told,” and through this construction and communication, we make sense of what we have experienced. And yet, we can’t quite put into words how it feels, and the doctors, family, strangers, and friends just can’t quite understand your pain either. Not really. As Melzack and Wall (1996) put it, “the reason for this difficulty in expressing pain experience… is not because the words do not exist. There is an abundance of appropriate words, but they are not words that we use often” (p.36). I was never able to communicate my pain, not in a way that seemed believable to those around me. “Character” they said; “pain builds character.” David Morris (1991) points out that this notion of masculine character, at least in America, is deeply rooted in “an impassive immersion in pain…If you are a man, you must be tough. If you are tough, you must be able to withstand pain” (p.181). To welcome pain, to greet it as an old friend, is seemingly the goal. Yet why can they not understand my pain? Why do I feel ashamed? Why must I bear it for your sake? It surely does me no good. But I do it anyway, because you all say I must.
The next thing I can remember, I felt a damp, cold cloth on my face. A woman was standing over me. “There you are sweetie,” she said. “We were scared for a minute there! There’s an ambulance on the way…are you in any pain?” As I came to the realization that something was wrong, I was unsure. “I don’t know,” I said. “Well you’re a brave boy! I’m sorry I had to use a diaper to use on your face. You’ll surely have a story to tell your friends when you get back to school!” As I looked around, I saw my cousin standing by the tree along with my aunt. “I guess I will,” I said, still not knowing what was going on, what I had missed.
This (un)conscious othering of pain that we do, that we commit to, when we cannot conceive of another’s pain, this explaining of it and then setting it out of sight is a way of coping, of dealing with the pain. We are so afraid of this awareness of our own and other bodies, at least when we are in pain:
The person in pain may reach out to others, yet this is in response to the individualizing effects of suffering…
[Pain] shows us, too, how those around us
do not, and cannot, share
our being; though men talk animatedly
and challenge silence with laughter
and women bring their engendering smiles
and eyes of famous mercy,
these kind things slide away
like rain beating on a filthy window
when pain interposes (Leder, 1990, p.74)
I can feel your pity, and your disbelief. “Surely it can’t be that bad; Take some aspirin,” you say, or even better, “Suck it up; be a man.” So what then are we to do? What am I to do? How can I tell you of my pain? Do you know that I don’t expect you to deal with it, but rather just help me share my burden? No, perhaps you don’t know how it feels when you are brought to a sudden, painful halt; to have every sense, to have your whole world focus on that one single point. Leder (1990) argues that pain imposes a centripetal force upon us, “gathering space and time inward to the center” (p.76). Your world spins on that point, centered on it, shaping everything around it. Stretching each twinge and stab into extended moments as they gather into that one point, the place where it begins. And ends.
By the time the paramedics were loading me into the ambulance, my parents had arrived. I was on the gurney, an air cast around my knee, still feeling confused, not unaware, but not fully present. “Eric, what happened?” they asked, exasperated, vexed by the spectacle. “I… I fell… and then I woke up. And the women patted my face with a wet diaper, and told me to stay still. And then the ambulance came…” I trailed off, beginning to feel shame at what had happened. “Are you in pain?” they asked. It was not a question, but an interrogation. Their minds had been made before they arrived at the scene. Were they ashamed?
It is incredible, how we allow others to explain our pain for us. Not always knowing the words ourselves, we allow others to speak for us, especially as children. I remember the words my parents used when telling friends and family what had happened. “He is okay, it’s not a big deal” they said; “Come on, you need to push through it, you’re strong enough to handle this,” they said; “you have to keep up! You’re only letting yourself down,” they said. I was ashamed of being in pain. Why could I not just push through? Why could I not be like everyone else? No more, I said, for it is my story now. I have reclaimed it, this shame I feel.
When you cannot take it, when you feel uncomfortable, then you will begin to understand how it built me, molded me. “I will tell you not what you want to hear but what I know to be true because I have lived it. This truth will trouble you, but in the end, you cannot be free without it, because you know already; your body knows it already” (Frank, 1995, p.63). Only you can really know your pain. Why then do you question and shame mine? I am constantly aware of it, this shame. I cannot run in the way that you can. I cannot step onto an escalator without fear; fear that my mobility might be taken from me again. I am constantly afraid, constantly conscious of my limitations. I decline when you ask if I would like to join you, not because I don’t want to, but because I am not sure I can keep up. I am ashamed of my weakness. Every quiver gives me pause. Every tremble gives me dread. Do you know? Do you know how? Why? Can you?
My parents drove me to the urgent care facility, trying to spare themselves the scene of pulling me out of the ambulance. As we arrive, I begin to see my knee swelling. Inside, we wait a bit before the doctor will see us. They take x-rays. They look to see if anything is broken, clearly not seeing my broken spirit, the shame I feel. “He seems to be okay” the doctor says, “no broken bones. Just ice and rest and he should be fine.” They talk about me, rather than to me. “I can’t believe they called an ambulance for this” my parents say, and we drive back to the hotel. It was then that I realized that they didn’t believe me that something was wrong.
Almost twenty years on, I still remember how it felt: the shame, the pain, the desire to just push through, and the disbelief that something was indeed wrong. I tried many times to tell others over the years, but they didn’t believe me until I had proof, incontrovertible proof. It was ten years before I couldn’t bear it any longer, long after the real damage had been done, and there was no true ‘fixing’ it. “You’ve got the knee of a 50 year old,” the doctor told me. What does that even mean? Am I supposed to understand that? At twenty? When the surgeon said it was fixed, and it was over, I still didn’t believe him. “We’ve fixed it” he said, “and with some rehabilitation, you’ll get back to normal.” ‘Normal’. Is it ‘normal’ to be scared to step on an escalator? Is it ‘normal’ for the pain to keep you up at night, even after you ‘fixed’ it? Because that is my ‘normal’; that is my day-to-day. That, dear reader, is my chaos narrative.
Works Cited
Frank, A. W. (1997). The Wounded Storyteller: Body, illness, and ethics (Pbk. ed.). Chicago: University of Chicago Press.
Leder, D. (1990). The absent body. Chicago: University of Chicago Press.
Melzack, R., & Wall, P. D. (1996). The challenge of pain (updated 2nd ed., reprint.). New York, NY: Penguin.
Morris, D. B. (1991). The culture of pain. Berkeley, California: University of California Press.