Losing Control

Unknown pleasures, so to speak.

There is no doubt that the nursing home where I currently live is a significant improvement on living behind a curtain in a hospital ward. And yet it is already starting to grate. There is the wailing of the patient with brain damage, which can start up at any time of day or night. There is the inevitable banging and bustling of the staff as they go about their duties. There are the hours that I spend each morning lying in bed, doing nothing, as I wait for the care assistants to go through the various processes required to get me ready. But one thing I do particularly like about the nursing home is that there are hardly any mirrors.

In fact, the only mirror that I ever really come into contact with is in the bathroom. And I only see that on shower days, when I never have my glasses on, and so can't really see my reflection anyway. (I very much miss wearing contact lenses, but I'm going to have to get used to that as I now completely lack the hand function required to put them in or take them out.) This is basically a blessing, because I really don't want to have to look at myself.

Indeed, one of the things I have been reflecting on when I've got nothing better to do whilst waiting patiently in bed each morning, is deciding which part of my body I now hate the most. You might think it would be my legs, given how useless they now are, and how it is their uselessness that confines me to either bed or wheelchair. But in fact they are so far down my list of priorities that they do not even register anymore. I just don't care about these useless lumps of meat, these pieces of dead weight. Cut them off and leave them outside for London’s rampant urban fox population to devour, for all I care.

Instead my top three, in ascending order, goes as follows.

In third place is my pot belly. Although I have been told on multiple occasions that this is the result of the collapse of my abdominal wall, meaning I have no muscles to hold in my organs, and which instead pile up on top of each other and push outwards, it doesn't change how it looks. And what it looks like is that I’m fat. Having spent the best part of 20 years exercising and being more conscious of my weight than is probably psychologically healthy, this is a hard thing to take. Still, at least I get to hide it. I currently wear a supportive brace, which has a hard plastic rear and a sort of fabric corset at the front. This is to help me build up strength over time so that I can sit up against gravity, whilst also ensuring that my spine does not collapse. A welcome side effect, however, is that it squeezes my gut in, preserving some imagined modesty in the face of casual observers.

In second place is my left forearm. When I fell in the accident, the first thing I landed on was my outstretched left hand. Given that I fell around 20 metres, the result was that I completely exploded my arm. Surgeons were later able to fix the bones in place: with dozens of metal screws and a huge metal rod, the limb was saved. Unfortunately, the damage was so bad that it obliterated the skin needed to heal over the wound. To remedy this, surgeons took a chunk of my right thigh and grafted it onto my left forearm. The result is a loosely diamond shaped patch of skin extending from wrist almost to elbow, which very much does not look like it belongs there. Genetically paler than my natural forearm skin, and sprouting the kinds of long hairs that belong on a leg and not an arm, I find this graft repulsive. The fact that it sags and bulges outwards, because it belongs on my leg and not my arm, doesn't help. But at least this too I can hide. I just need to wear long sleeves, and I can worry about summer when it comes.

Which leaves, in first place, my hands. And the reasons that I hate these are multiple. To begin, as with my potbelly and my Frankenstein forearm, I hate the way they look. It might sound silly, given that I'm always in a wheelchair now, but I hate the fact that they make me look so disabled. At the end of rehab my physio said to me the I present like a high-level paraplegic, rather than a tetraplegic, so well had I done in recovery. To which I replied: except for my hands. Visibly misshapen, and clearly not working properly, these flapping lumps make clear to everybody how broken I really am. And this is one thing that I cannot hide.

I especially hate my left hand, as it happens. This is because a side effect of the reconstructive surgery in my forearm, plus the unfortunate fact of experiencing heterotropic ossification (i.e. out of control excessive bone regrowth in the healing process, which could not have been prevented and cannot be rectified through later surgery), means that I am unable to rotate my left wrist beyond a couple of degrees. This means that my left hand almost constantly sits at the same unmoving angle, amplifying its visible deformity and functional near uselessness. I first noticed this the last time I sat for a period in front of a mirror, back in rehab when one of the kindly healthcare assistants offered to cut my hair after several months of uncontrolled growth. She did a really good job, but it involved sitting in front of a mirror for 20 minutes getting a good hard look at how horrifyingly repulsive my hands now are. (Like I said, one of the things I like most about the nursing home is how few mirrors there are.)

But my hatred of my hands goes beyond just the fact that I am ashamed of, and repulsed by, them. There is also the fact that they have an annoying ability to remind me of the state I'm in. Over the last few weeks friends have been to visit, and I particularly like going with them to the cafe round the corner, an escape from a medicalized environment. Indeed, when people I know through academia come to visit me, if we get stuck into a research related conversation and I get absorbed in the ideas, a nice side effect is that I forget that I'm sat in a wheelchair. I'm just in a cafe with a friend, chatting about intellectual matters, the way I used to. Until, that is, the conversation gets intense, and my body language starts to kick in. I've always been an animated speaker, and that deep-rooted part of human communication involving the body as well as the voice hasn't gone away for me. I still automatically want to use my hands to convey parts of my meaning – which has the effect of reminding me of my situation. I'm trying to make some point about political theory, or whatever, and out of the corners of my eyes I see these offensive appendages flopping about. And then I remember: I'm disabled, I'm sat in a wheelchair, I'm going back to a nursing home soon. It really messes with an already fleeting escapism.

More fundamentally, though, I hate my hands because of what they symbolise. As nonsensical as it may sound, I feel that they are the parts of my body that have let me down the most. In their massively reduced capacity they represent, and are also the reason for, the enormous reduction in control over my life. This is obviously true in a direct and literal sense: the minimal gripping function of my left hand is marginally better than the pretty much nonexistent finger function in my right hand, but their overall uselessness stand in the way of being able to do things like self-catheterize, manage my own bowels, prepare my own food, and in general not be so totally dependent on other people. My hands symbolise the gulf between a life of ‘mere’ disability, and a life of disability combined with total dependence on others just to stay alive.

But it goes deeper. My hands especially, but also the other parts of my body that I hate, symbolise a more profound loss of control over the body itself. Prior to my accident I consciously manipulated my physical capacities and appearances over periods of months and years. To increase my finger strength for climbing, I would strap up to 20 kilos to myself and hang off a 20-millimetre wooden edge. Now I can't even pick up a pen to sign my name – and there is nothing I can do about it. When I was training consistently, I was able to manipulate my weight from a high of 81.1 kilos, to a record low of 69.9. (Yes, I used to write it down.) Now it doesn't matter how much exercise I do, or how careful I am with my diet – that belly will forever remain. I was once proud of how developed my forearm muscles were, the result of years of dedicated training. Now one arm sags with bloated transplanted flesh, whilst the other has dwindled to a twiglet. Again, there is nothing I can do about either. I have lost control.

For many years, I liked my body. Indeed, if anything I was unduly vain about it. I had no problem taking my top off, either at the climbing gym or out at the crags. And so I suppose I should actually be grateful. Some people hate their bodies their whole lives, especially women subjected to the nefarious influences of our image-obsessed culture. I will only have to hate mine for the second half of my life, or however long I end up having left. But it is hard to shake the feeling that there has been insult added to injury here, by the very fact that in many respects I no longer have control over what I physically am, and in ways that for years I took for granted. (There is a world of difference, or so it seems to me, between having the ability and lacking the willpower, versus having the willpower but lacking the ability.)

Just another one of those things I need to learn to accept, I guess. Just another one of those things that you don't know that you've got, until it's gone.