Trying to communicate what it is like to live with a body that doesn’t behave normally
St. Francis of Assisi, it is said, referred to his body as “Brother Ass”, a good model, I think, in many ways. It is a way of treating the body as a living thing and acknowledging it as part of the whole human person, without reducing the person to it, or suggesting that indulging the body is the main aim of life.
However, my body is more of a “Sister Camel”. Donkeys, if well treated and well trained, generally co-operate. Camels do not.
In some ways it is difficult to write about this because from the social point of view it is so bewildering. I have spent my life, one way or another, being told that my body cannot be or act as it does. My entire experience of the world is mediated through a body that does not act normally in some very subtle, highly variable, and extremely complicated ways.
For instance, at the age of thirty-one, I still sit on the floor a lot. There is more than one reason for this. Sometimes I have trouble with low blood pressure and sitting on a chair with my feet down is too much. Sometimes there is no way of steadying a chair in an environment where I will either fall off or knock it over – or both – if it isn’t firmly against something and I have something to lean sideways on. Sometimes it is plain too uncomfortable or tiring to sit up on a chair for any length of time, as I can’t really maintain a healthy posture. And sometimes it is fine: it depends on so many details. At present I have the computer in front of me on a monitor stand, my office chair (actually a reclining gaming chair) tipped back to a position of about forty-five degrees, and one foot on the floor and the other on the footrest. I’m typing on a Bluetooth keyboard on a small desk in my lap. Sometimes I will lie right back while working, but at the moment doing that is making me feel dizzy for reasons I don’t understand. The sheer complexity is incredibly difficult for me, but even more confusing for others, who have no way of following what is going on at any particular moment.
Part of what’s going on when it comes to the difficulties communicating is undoubtedly a problem of reference. It isn’t possible to tell, when we point to a colour and say “blue”, “red” etc. that our experience of the colour is actually the same as that of the person we are talking to. We can only equate our own experience with the word that’s used. There is reason to suppose that most people have a fairly similar experience given that they have no trouble learning and relating to the social categories of colour and giving colours their right names, and those who have different sensory experiences tend not to be able to do that either to the same extent or at all (colour-blindness, actual blindness). But that does not hold with everything. I am starting to get the impression, for instance, that when I say “uncomfortable” many people would say “quite painful”. This is because the pain in hypermobile joints doesn’t generally show, and tends to be something you have to ignore because nothing is going to make it go away. From outside, it is quite natural to say “don’t make a fuss. Everyone finds things uncomfortable from time to time.” So that becomes the linguistic description of constant pain in a child who has never really known differently. Similarly, I am inclined to say I “dislike” a food, when what I actually mean is that I cannot eat it, because my body simply cannot be made to swallow it. I still have no idea precisely what is wrong here. And this difference of language makes it particularly difficult when talking to doctors, because they naturally hear what most people would mean by words like “uncomfortable”, and don’t realise how significant the effect actually is.
I don’t know what can be done about this, because the normal process of language learning and language use does require a certain assumption that experiences are similar. But realising it can happen is probably a good first step.
Another frustrating problem is the amount I fall over when standing or moving about, usually in confined spaces. For this reason, I believe visual disturbance plays a part. My vision is rather like continuously looking at everything through a waterfall. However, this is certainly not the only thing which gives me problems. My knees bend backwards more than ten degrees – which means I am in an unstable position when they are locked. My ankles seem to be wobbly – though I’m still to find out exactly what is going on there – and there is certainly something wrong with my hips. Hypermobility disorder tends to overwork muscles (which probably also suffer from the genetic lack of properly formed connective tissue) and to confuse the body about the position of limbs. Putting my feet down in absurd places such that it is impossible to balance is a major problem, particularly when turning. So is the fact that none of the joints move smoothly. (Think of the difficulty of trying to work a puppet precisely when it is strung with rather worn out elastic rather than string!). And on top of this, I suffer badly from pre-syncope: the symptoms preceding fainting, generally dizziness and blacking out of vision. And I will be apparently fine, and suddenly find my hip or my ankle doesn’t want to work when it comes to getting up. Or I’ll find my body suddenly doesn’t understand which way is up and just tip all over the place like the drunken sailor.
The main thing I would say socially about falling is that a capacity to control a fall is not the same as the capacity to prevent oneself falling at all. If I’m in a position of unstable equilibrium, I can usually fall into an open space if there is one there, but I can’t usually keep myself on my feet, and trying to do so tends to be more dangerous. It isn’t a decision – there isn’t time to think – it is a matter of body memory learned over many years. I did Judo when a child, and though that may not have helped in some ways, I spend a lot of time learning to control falls and to fall safely. I’ve come off stairs from some way up and simply rolled when I hit the bottom, though my capacity to get away with that sort of thing is lessening with age. Nothing will take much impact any more. My worst falls are generally those when I haven’t realised that I’m falling, which does happen. I’m also very nervy in crowds and around dogs, not because I have a phobia of either (yet), but because if people grab hold of me (happens a lot – I use a long cane) or if dogs jump up, or run around my feet too closely (confusing my vision) I tend to be knocked over. Keeping your dog under real control is a great service to many disabled people.
With some things, it is life experiences other than those of disability which cause the problem. I studied philosophy and had a friend who was a medical student. I am told that about the worst pain you can get is a form of neurone disease starting in the pain centre. It is utterly crippling, leading to people lying in bed unable to move, if it doesn’t actually kill them off hand, and no medical technique can relieve it in the slightest (at least, there was no effective pain relief ten years ago). When people say “rate your pain on a scale of one to ten, where one is no pain and ten is the worst pain you can imagine” that is what I think of as ten. I’ve probably never reached 1.1 if you think like that. So I just end up bewildered. People need to find a more objective way of assessing pain (impact would be, I think, the best: one is no impact, and ten is can’t move because of it. But that needs a post of its own).
One of the other things I find difficult is that, while I do have a significant problem, it actually isn’t as bad as most of the people I’ve come across who write about the same condition. They deal, for example, with feeding tubes and continuous dislocations, they have a heart rate that goes up by seventy when they stand up, they are continuously at a much higher pain level. So I feel randomly guilty about having a problem when it is less bad. Not at all logical, but feelings are what they are.
Anyway, improving understanding means communicating across the experience gap. The first thing is finding ways of mutually understanding that it is there.