Civil War

Body as Battlefield

When it comes to paralysis, it is common to hear the metaphor of being “a prisoner in one’s own body”. Indeed, I have used it myself. But it is not quite right. I am not a prisoner. I am at war. At war with a body that I used to govern peacefully, but which is now in a constant state of insurrection. A civil war.

To see this, it helps to understand that the popular comprehension of paralysis is, in many cases, wrong. The uninitiated tend to picture a body that cannot move; that is somehow frozen in place, limp and docile. Unfortunately, there is no guarantee of it being like that. Indeed, when it comes to spinal cord injury, more often than not, paralysis isn’t like that. The main reason for this is spasticity, a consequence of the nervous system getting disconnected from the brain, with two major manifestations. First, some muscle groups become incredibly stiff and tense, blocking range of motion and preventing movement (even if the brain can nominally talk to the parts of the body that it wants to move, let alone those it can’t). Second, when some muscles try to send signals up to the brain, the interruption of the communication mechanism caused by lesions in the spinal cord sets off a catastrophic feedback loop, issuing in their uncontrolled spasming.

The result is that a paralysed body is not necessarily one that cannot move. When it comes to spinal cord injury, it is rather a body that does not obey.

On the one hand, this applies in the more familiar sense: that the body ignores the brain’s commands to initiate movement. I can tell my fingers to grip, my legs to stand, my toes to wiggle – and nothing happens. But my body also ignores me when I tell it to stop moving. When my right leg is jittering frantically up and down. When my abdominal muscles are ratcheting my chest forward and throwing my head back. When I’m kept awake by the noise of my foot scraping back-and-forth across bedsheets in the dark. My body can move. The problem is that, from my collarbones down, it moves when it wants to, not when I want it to.

Having once been sovereign over all I was, I must now fight myself to do even the most basic of tasks. Unlocking the brakes on my wheelchair is virtually guaranteed to send my abdominals rigid (never pleasant, as this is the one part of my sub-collar body that still has feeling). Transferring from wheelchair to bed prompts my legs to shoot out horizontally, putting paid to hopes of independent nights. Trying to use what is left of my hands, to get my own legs off the bed in the morning, makes a daily effort of what was once the easiest of tasks. Fight, fight. Every day.

Which is not to say that there are no moments of respite. Mornings tend to be calmer; lying in bed is the least aggravating position of all, blessedly making sleep a possibility. But as Thomas Hobbes remarked, “For as the nature of foul weather lieth not in a shower or two of rain, but in an inclination thereto of many days together: so the nature of war consisteth not in actual fighting, but in the known disposition thereto”. The insurrectionary semi-corpse that I remain attached to makes no secret of its known disposition. Foul weather, indeed.

And I am forever vulnerable to sneak attacks. Bowels that open without warning, at any time or place. Roaring flatulence, awkwardly ignored by all within earshot. An autonomic system that tries to kill me in protest over pains that I cannot feel. A permanent vigilance required, because at any moment my flesh might be dying from compression, beginning a process of internal rot that threatens death in slow motion.

Like any good enemy, my body mocks me. Every morning, as I go through the pantomime of putting on my own T-shirt, I am greeted with the sight of my distended, overweight belly. At 36, I had a clearly defined six pack. At 38, I have a bulging gut that jeers at my loss of control. I don’t even eat that badly, trying to retain some of my old discipline, a point of principle. But when you burn zero calories all day, when serious cardiovascular exercise has become an impossibility, when you have no remaining abdominal wall to hold your organs in place, well fat is what you become. Alongside my misshapen hands and my blocked wrist, I display the mutilations of my civil war.

A war that I cannot win. The best that I can hope for is to hold out for as long as possible, subsisting on my remaining territory. One day, the forces of rebellion and their allies (infection, pneumonia, the quisling thoughts that tell me just to give up now) will overwhelm me. In the meantime, various strategies are deployed for day-to-day engagement. A strap for feet, keeping my legs in place and hiding the worst attacks. Stretches and massage guns, to try and dampen down the hypersensitive overreactions of lightly brushed skin. The possibility of once more resorting to unpredictable medical interventions, faced with the undeniable fact that in the last few months the war has been going steadily worse.

But this war is not over yet. My body is not a cage, it is a battlefield. And in that realisation comes, perhaps, a kind of fortitude. A prisoner is passive, no longer an agent; a creature controlled by the whim of others. Better to be a sovereign, no matter how beleaguered, fighting a rearguard action even if only to postpone the inevitable. Because if there is one thing I’ve always known how to do, it is fight. To be sure, I’ve often picked the wrong ones, and even when I’ve picked the right ones, I’ve had a penchant for picking them at the wrong time. But if the task is, ultimately, to fight, well that I can do.

Rage, rage? To this I’m no stranger. Fuck the dying of the light.