Complex Care

An aspect of decimation

Back when I was in spinal rehab a lot of emphasis was put on the importance of securing good care, post-discharge. And this isn’t wrong. A carer does not just wipe your arse, get you dressed, and feed you. They also need to do things like check your skin for signs of pressure sores, not only administer medication, but stay on top of prescriptions and resupplies, ensure catheter equipment is in stock and properly maintained, keep the place clean for reasons of both hygiene and basic dignity, and be relied upon to contact district nurses or emergency services if things start to go wrong. Obviously enough, having somebody who performs all these functions (and more) well is going to make your life a hell of a lot smoother than if they are neglected. Part of the aim of rehab is to teach you to “direct your own care”, which to some degree is necessary, but inevitably there is a large chunk of stuff that you just have to rely on somebody else to do. Hence, getting good care really matters.

But it is hardly the end of the story. One thing that was certainly never discussed in rehab, and I’m not sure I’ve ever really seen mentioned anywhere, is the psychological toll, the sheer emotional impact, of being an adult suddenly required to depend almost entirely on others just to exist. And this applies even if, like me, you are lucky enough to get good care.

After all, what exactly is your relationship to this person? This person who sticks their fingers up your arse, squeezes shit out of you, washes your cock and balls in the shower, puts your trousers on? They are not a friend. They are not family. They are not a partner. And yet your relationship to them is one of extreme intimacy – which goes exclusively one way. The technical term for this is, I think, “a complete head fuck”. There is simply nothing in your earlier life that you can draw on to make sense of this relationship; no pre-existing frameworks within which to slot what is now happening. Note also that you got no prior warning – no prior time for preparation – of the fact that you would be thrust into this new way of living. You just woke up in a hospital one day, and this was it. Forever.

I’ve never really been comfortable with the very term “carer” in this context. It just strikes me as wrong, with its implications of somebody who is doing what they do because they care. As if motivated purely by benevolence, by love or affection. But this is a job. They are doing it, ultimately, because they are getting paid. And there is nothing wrong with that, in and of itself. It would be insane to ask or imagine that people should do this work for free. But calling it “caring” obscures the fundamentally transactional nature of what is going on, making it yet harder to mentally calibrate. This person is quite clearly providing a service, but a service of extensive intimacy. And one of the things about intimacy is that if it is being provided as part of a paid-for service, that inherently corrupts its status as intimacy. So what is this new thing, that there is no getting away from, day after day? I’ve been living like this for well over a year now, and I still don't know.

I suspect that it’s for reasons like this that people in the wider world of spinal cord injury sometimes refer to carers as “personal assistants”, or PAs. I can definitely see the logic behind this. But I find it hard to adopt it myself. Referring to the person who takes me to work, because I can’t do it by myself, as my “PA” feels pretentious, and anyway inaccurate. In my mind, “PAs” are for high-powered executives in leadership roles. Whatever I am now, I am not that, and it feels silly, almost fraudulent, to speak in terms already reserved in our language for a very different kind of life.

All of which has the cumulative effect of ensuring that I’ve never shaken the feeling I acquired in hospital. That I now occupy a strange status between being livestock and a fully-fledged person. It is the job of other people to keep me fed, clean, and cleaned out. And just as I’m sure different farmworkers display different levels of kindness to the animals under their charge, different support workers will engage with different levels of humanity. There are some who talk to you like a dog, and I mean that in a good way, because most dogs nowadays get talked to with affection. And then there are those that talk to you like something less than a dog, in more-or-less the tone I use when telling my Amazon Alexa to switch on the lights. Which is assuming that the person in question even has enough English to manage a basic sentence. (That is by no means guaranteed, as I’ve seen plenty of times both in and out of hospital.)

Which is all just another way of saying that spinal cord injury, especially for high-level tetraplegics, is not just a physical condition, but a wholesale assault upon your sense of identity. Of your ability to make sense of who you are, of what your place is in this world. On the day I broke my neck my life was decimated in ways that go far beyond simply not being able to use my body. This is true for anybody who suffers a spinal cord injury, albeit in various ways and to varying degrees. And yet to spend time in a hospital or rehab centre, under current medical thinking, you’d be forgiven for being led to believe that the battle you face is mostly just a physical one. To be sure, there are a few good people within the system, trying their best to make it understood that things are very much otherwise. But they are under resourced, and underappreciated.

In the meantime, I will continue to be woken up every day, at a time not of my choosing, to be poked and prodded and manipulated by not-quite-strangers, eventually being extracted from bed, to sit in the same goddamn chair, in the same goddamn rooms, reliant on others for my every need. A sort of half person, trying to make sense of what’s left.

I’m not there yet; I’m not sure I ever will be.