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.
A prayer after the non-ordained were refused Communion all through Easter to Ascension.
Art Thou ascended, Lord, who hast not yet appeared
To us who in agony weep beside the fast-locked door?
Who with minds perplexed, and hearts by Thy loss seared,
Still hopeless grieve Thy death, and may not hold Thee more.
Are we no more Thy people, who locked outside Thy house,
Are given Thee in picture and forbidden to receive?
Hast Thou turned from all within Thy mystic Spouse,
Except the very stewards whom Thy sheep of Thee bereave?
Art Thou ascended ere Thy people can Thee touch?
Hast Thou Thy human nature abandoned in Thy death?
Thus unassumed, unhealed, and lost in peril such
That we would betray our faith and mourn our pointless breath.
O Lord, if the gift Thou gavest meant more than bitter loss,
As human tears Thou weptst and human blood didst shed
For us sinners counted precious upon the accursed cross,
Look with favour on Thy people in their most bitter dread.
O turn again, O turn us – turn to Thy starving sheep,
And be Thyself our shepherd, and feed again Thy flock.
O leave us not for ever outside Thy tomb to weep,
O answer Thou the door who Thyself didst bid us knock!
N.B. “accursed” is pronounced here, as I believe traditional, with three syllables. I can’t work out how to mark that. And also, I do appreciate most people are acting in good conscience, and anyway, however rightly horrified I am by what is being done from the logical and spiritual point of view, I cannot rightly assign blame.
May is Ehlers-Danlos syndrome awareness month, but as far as I can make out the same problems apply to many other rare, or even just confusing, conditions. The genetic connective tissue disorders seem to be a particular issue, due to a combination of comparative rarity, multi-systematic issues, and comparative invisibility. They produce effects no one expects to see. The human body is held together by the proteins in connective tissue, so a genetic fault in the formation or transport of one of these proteins produces multi-systematic symptoms of widely varying severity wherever that protein isn’t able to function in the required way.
For example, I have neurological visual impairment, severe working and short term memory problems, severe sequencing problems, relentless joint pain (which I thought everyone had until recently), hypermobility, functional joint problems, headaches, significant fatigue, swallowing and voice control issues (causing problematic dietary issues), tendency to fall, gait problems, difficulty balancing on chairs, difficulty maintaining adequate posture, mild gut/abdominal organ problems, proprioceptive issues, sensory hypersensitivity problems, depression, anxiety, fatigue, paresthesias, palpitations (thankfully demonstrated harmless on scans), unusual proportions (makes it harder to find orthoses that work), fainting, temperature control problems, and probably a few things I’ve forgotten or haven’t been investigated yet. While there is no ruling out co-morbidity at this stage (i.e. that some of these things are in fact caused by a second condition), as far as current scientific knowledge goes, all these problems can be caused by the one syndrome. Combined with all this, I have a degree in philosophy (which took me eight years), I can walk ten miles (if I’m prepared to put up with the resulting pain and fatigue), I do complicated needlework, and I will climb over a fence if a gate can’t be opened. It’s not simple.
There are a lot of real things which don’t seem logical at first sight. The extreme complexity of the human body results in an equal complexity with regard to what can go wrong with it.
P.S. And here is a zebra if anyone was expecting one 😛 🙂
I am long term disabled and am on a time unlimited award of the rather cumbersomely named “Income Related Employment and Support Allowance”.
It is the 14th May. Today I received two letters from them, both dated the eighth of May, and involving eight sheets of A-four paper in all. The latter three of these sheets seem to contain exactly the same text, except one significant difference in date.
The one I opened first informed me that from the 4th June my Employment and Support allowance would be X amount due to a change in “money coming in”. Uh, what?
The one I opened second informed me:
“We cannot pay you Employment and Support Allowance from 7th May 2020. This is because of: a change in money coming in.
“You are not getting any more income-related Employment and Support Allowance.”
After a brief explanation of why not, it immediately continues:
“From 11th June 2020 your Employment and Support allowance will be X a week…”
Are you confused yet?
To add to the confusion, the financial information on the last sheet, informing me what they think my income is and what I should be entitled to, is identical except for the date on which payment will reassume. Neither explains why they think I currently have a higher income.
The only recourse if I want real information would be to ring the helpline, which would, from previous experience, likely result in my sitting for more than half an hour in a queue only to get through to someone who may have no idea what the answer is anyway, though they are better with this type of query than with some others. Besides which, being severely dyspraxia (a major part of the reason I am on benefits in the first place) on a bad day it is not really possible to either dial the phone-number right or get through the security checks with things like NI numbers. I’m quite capable of giving my date of birth wrongly, though I haven’t done that for a while. Add in depression and my other problems and pursuing this sort of thing is impossible. (I am one of the lucky ones: my family picks it up when I can’t do it). Moreover, no-one can spend hours of energy pursuing confusing letters, and also put this time and energy into things which may help them move into work, let alone people with conditions that involve fatigue problems.
My guess is that these letters are a result of the fact that I have an unpredictable payment every now and again from a family trust, and that they have deducted an amount of money equal to this extra payment last month or something. But it would be seriously helpful if they told you that, rather than coming out with machine generated jargon which tends to be fairly unintelligible and doesn’t say what you actually need to know to manage your money well (i.e. what the change in your income has been). All of this is typical – it isn’t an aberration, and I have had much worse from them (suddenly requiring several years worth of back statements from several bank accounts, with indisputable mistakes in the dates involved, for example).
Could I perhaps suggest that one cross-party reform to the benefits’ system that is overdue is that of employing a few competent administrators to write intelligible letters to claimants about what is going on and why?
Another discussion about civil rights and lockdown: considering prejudice and fair play.
There seems to have been an absolute uproar regarding the possibility that the over seventies should be legally obliged to stay at home, while everyone else is allowed a greater degree of freedom, while there does not seem to be similar uproar about legally obliging everyone to stay at home.
I appreciate that part of this is down to practical issues, such as the notion that people would have to carry identity documents to prove that they were not over seventy, but still, I don’t think that explains the whole of it. Why should we feel an immense sense of injustice when one group is singled out like that, and not more of a sense of injustice when exactly what we would complain is being done to them is being done to everyone?
This is something that can be noted in other situations as well, for instance, if an employer paid their one white staff member an unjustly low wage, as opposed to a situation where they exploit all their staff members equally. However, in that situation, I suspect the implied racism is argued to be more sinister than plain, universal greed. The injustice when done to more people is greater as an injustice, but this is balanced off by the particular moral depravity of racism. I am not sure if I am convinced that this actually stands to the extent to which we tend to take it, for it would seem to me that a respect for the humanity of some is more readily extended to the respect for the humanity of all, than respect for no-one’s humanity.
I can also see that a feeling that something which is the same for everyone is different from placing restrictions on one group of people. For instance, I would tend to argue that if an ID is required for buying age restricted products, it would be fairer to require it from everyone, rather than merely from those who look in the eyes of that particular checkout assistant as if they are under 25. That everyone should have to put up with this irritation and inconvenience for the sake of protecting children and teenagers seems fairer than to say that only people who look in a certain way should.
I do agree with that argument as far as that sort of situation goes. However, the lockdown isn’t that sort of situation. Some children still have access to education while others don’t – on the grounds of what their parents do. Many people are still working, if hardly as usual. Those who live alone are confined alone (I did not touch another person for more than three weeks in the early part of the lockdown – indeed, I was not in the same room with another person for a day short of three weeks – I was using Skype video, and it is no alternative); those who live with others are at least not completely deprived of human contact – but are potentially having to live in a close confinement with them in an extremely stressful situation. I have a house and garden, and can easily exercise without coming into contact with anyone (not necessarily a positive); others can’t come in and out of their homes without using shared lifts or staircases.
I think “fair play” can be brought in when it is the same for everyone (that is, everyone pays the same and everyone has the same access to the advantage gained) but in neither direction is this the case. There is both the issue of the fact that the lockdown is much severer for some groups than others, in a way that is practically unavoidable, and the fact that, as most people don’t seem to be at serious risk, their gains are much more limited (they won’t be significantly ill, though they would suffer if infrastructure broke down). As in the case of a lot of others with similar health problems: there was 100% chance I would be made very seriously ill by lockdown. I am not at risk from COVID-19, as far as anyone knows, though I would be from structural breakdown (having said, does severe lockdown not run the risk of causing such breakdown too?). Could one suggest therefore, that the policy constitutes indirect discrimination? I don’t have a clear opinion on that. But it is interesting.
Anyway, perhaps it would be reasonable to say in this case: if it is wrong to tell the over-seventies that they have to be confined at home, while no-one else is, despite the fact that this policy is probably a very logical one from the economic/illness/protect the NHS point of view, it is presumably wrong to tell everyone who isn’t a keyworker that they have to be similarly confined. This would actually lead to the conclusion that severe lockdown was never a legitimate policy in the first place. Given that my other lines of thought have tended to lead me more to “it’s wrong for this length of time,” I am somewhat perplexed by this.
Whatever else can be said, however, I think that considering legitimacy of restriction of normally important freedom in the context of epidemics and other natural disasters is overdue. Human rights declarations tend to focus on other types of situation. If these considerations are taken seriously, they cannot be set aside because people might spread disease any more than they can be set aside because someone might start a riot.