Shame, redux

Fighting a corpse

Small children go through a phase of thinking that if they can’t see you, then you can’t see them. That somehow, hiding their eyes makes them invisible. This is a function (I think) of their not having yet developed the cognitive ability to adopt the perspective of other people. After all, it requires fairly sophisticated mental processing to comprehend not just how you see others, but how others see you, from their own perspective, and which you must imaginatively adopt in order to understand. Once that is possible, however, it becomes obvious that just because your eyes are hidden, it doesn’t mean that the rest of you is. Hence why older children soon learn to play hide and seek in more sophisticated ways than their younger siblings.

But perhaps we never entirely grow out of this early belief that if we can’t see others, then they can’t see us. From where else grows the well-known, apparently universal, tendency to hide one’s face as a response to shame? We have all seen news footage of suspected criminals being bundled into police vans, surrounded by mobs of photojournalists and cameramen, heads concealed beneath a blanket or garment. Why bother with the charade? We all know whose face is being hidden, the identity of the accused. And they know that we know who they are. They also know that even if they can’t see us, we can see them. Yet there is something somehow comforting in being able to hide one’s face. We understand why they do it. We have all done it ourselves, albeit in (hopefully) less extreme circumstances.

These days, I spend quite a lot of time trying to hide my face. This is especially so in the mornings, throughout the daily humiliation of manual evacuation. Back in rehab I developed the skill of being able to spend many hours lying with my eyes in the crook of my elbow – which is trickier than you might think, especially when you have spasticity limiting the range in your shoulders. Initially I did this as a way of coping with having to stare up directly at a fluorescent strip light, of the kind thoughtfully placed overhead throughout all the sleeping bays in the spinal ward. But since then, it has come in very handy as a way of hiding my eyes – the closest I can come to hiding my face – every morning, when two people come into my bedroom to first stick suppositories up my arse, before squeezing my stomach and poking me up the backside until I shit myself. The shame washes over me, without fail. But hey if I can’t see them, perhaps they can’t see me? Likewise when I soil myself without warning, having to be put back to bed, trousers removed, buttocks wiped: over my face goes my arm, a shred of dignity pathetically grasped for.

The zenith of this absurdity takes place on shower days. There is nothing quite like staring down at one’s own corpse – both bloated and shrunken, at the same time but in different places – forced to rely on somebody else to do the necessary scrubbing. Blessed relief comes when the water is turned off, and a towel handed to me, because the one thing I can still do is dry my own hair. Over my head the towel goes. And there it stays, for as long as possible, whilst the rest of me is dried off, and I’m eventually wheeled back into the bedroom, before clumsily negotiating the transfer back to bed, ahead of being dressed by others. I love that towel. I love that I can briefly hide my face. If I can’t see them…

If one finds oneself repeatedly exposed to shameful situations, two possible responses standardly exist. Option 1: change things, so that one avoids the shameful situations. Option 2: recalibrate one’s emotions, so as to cease finding the situations shameful. For a long time, I put my hopes and aspirations into Option 1. But I’m increasingly being forced to accept that it is not a viable strategy.

Early in my post-accident reckoning, I latched on to the examples of tetraplegics who have managed to transition to an independent life, without the need for caregivers. Such people do exist; I have met some of them. And for a long time, I set myself the goal of joining their ranks. I knew it wouldn’t be easy. I knew most tetraplegics don’t make it to the point of living genuinely independent lives. But so what? I’m no stranger to hard work, and I’ve spent a lifetime outperforming the odds. I just had to knuckle down. A life dependent on caregivers filled me with horror, so the bargain I made with myself was that it would be temporary. Eventually, I would escape my shame by escaping the situations that deliver it.

Except the writing is increasingly on the wall, that such situations cannot be so easily escaped for me. For a while, I’ve had the nagging knowledge that all those tetraplegics living without care are also in committed long-term relationships. Whilst they don’t rely on professional caregivers, they are most definitely not surviving on their own – which is hardly surprising given the reality of high-level spinal injury. I, however, am on my own.

Even more significantly, whilst also being tetraplegics, those who are managing to live without professional care have significantly more hand function than I do. With no grip capacity in my hands, my prospects for dealing with my own bladder, cooking my own food, or even managing to pull down a t-shirt so that I can dress my top half – let alone the joke that is trousers – remain essentially non-existent. Managing my own bowels and personal hygiene lie beyond the realm of possibility. Shame-inducing situations are thereby set to persist.

For a long while, though, I put my hopes in at least being able to do more for myself in terms of mobility: building up the strength and techniques required to move with as little assistance as possible. And for a while, things were going well. I became noticeably stronger after several months of distinctly unpleasant training exercises, and transitioned to being able to consistently transfer from wheelchair to bed, and vice versa, without the use of the horrible (shame-inducing) mechanical hoist. I even made progress in being able to get from sitting on the edge of the bed, to lying down with both of my legs on the mattress. This might not sound like much, but it is incredibly difficult when you have no mobility from the chest down and your hands can’t grip. I was also getting better at reversing the process, going from lying down to sitting up, ready to transfer to the wheelchair.

Except then, about five months ago, the spasms started. Over just a couple of weeks, my ability to move myself around using only my shoulders, arms, and wrists became increasingly hampered by torso and legs responding to any stimulated movement with fixed rigidity. Whereas I was initially trying to drag around an inanimate lump of matter, which was hard enough, the corpse then started to fight back. And it was a fight I simply could not win. My months of mobility progress quickly stalled, before going into sharp reverse. Initially, I hoped it was a phase that would pass. That progress could be resumed. But it looks rather the reverse. That like many people before me, my spinal cord injury will be characterised by a spasticity that worsens, rather than improves, with time. I have accepted the need for medication to help this, which does take the edge off, at least when I’m sat around minding my own business. But with a corpse that fights me whenever I try to move, my prospects of unassisted independent mobility look bleak indeed. The situations I find shameful thus look set to remain.

Dependence on care, I’m coming to have to accept, is not going to be temporary for me. But this is a hard thing to accept, because I despise having to live like this. In part, because I find it shameful. Which, I suppose, means coming to terms with the second option: changing my perspective, such that I cease to experience the forced intimacy of bodily dependence as a source of shame. But how to do that? I really have no idea. Perhaps time will help, as it does with most things. Until it does, I’ll be hiding my face whenever I can.