And remove cap?

When health and safety defeats its own point

I have a certain amount of trouble swallowing tablets, and a tendency for them to make me feel sick, with the result that I sought out a soluble form of an over the counter medication I take on a comparatively frequent basis.  However, I didn’t appreciate the fact that it fizzes (whether for cosmetic reasons or for some medical reason) and the pharmacist suggested, that, instead I take a dose of the suspended liquid formulation usually intended for children, which is slightly less horrible.

I do not have the slightest trouble opening normal childproof bottles, such as the caps on the top of bleach.

I spent ages trying to get the cap off this medicine bottle.  By ages, I mean that I spent some time on at least three different nights trying to remove the cap, before (on all but the last occasion) giving up and resorting to the fizzy formula.

It took a pair of scissors, a pair of pliers, and a hacksaw.

The instructions say, “shake the bottle for at least ten seconds and remove the cap.”  Nothing more.

There is a diagram on top of the bottle suggesting it should be pushed down and then screwed round.

I tried this.  It had no effect at all.

I cut the bottle seal by slipping scissors up inside the edge.

It went round and round, click click click, but went nowhere.

I forced scissors up under the lid and cut a slit in the cap.  It took a lot of uncomfortable force, but it was possible.  I broke the outer cap off.

The bottle comes with a syringe, and it says that there is a hole to put this through.

But what I had exposed looked like a sealed, solid plastic knob.  It certainly had no hole in it.  Nor, apparently, was there any way of getting it off.  Had someone sold me a bottle wherein the machine had made a “mistake” and failed to create a hole?  Or was it designed like this?

Eventually it came to this evening, wherein I simply could not stomach the fizzy formula on top of bread and marmite.  I cut a groove in the side of the inner cap with my hacksaw.  This was awkward and not as safe as I would have liked because there was no way of holding it that could avoid cutting towards my hand.  So I tried to wrench the knob-like cap off with a pair of pliers without cutting all the way through, and eventually succeeded.  And came through to the stated hole, etc.

So presumably it was designed like that.

Health and safety, or cause of danger?

I kept imagining a parent trying to hammer their way in with a beloved and sick child screaming in agony in the background.  Tried to imagine trying to be careful with the hacksaw and my hand under that sort of stress.

That sounds to me more like something that should be forbidden as a form of torture under the international code of human rights, than used as a health and safety device!

Moreover, a bottle that takes a hacksaw and a pair of pliers rather defeats the point, because the bottle is liable to end up in a state wherein the lids are completely not secure (in fact, my outer cap just comes off, but the inner one may need pliers again), or left off due to the difficulty of getting them off again.

Overdoing it defeats the point.

And seriously, “and remove cap?”  That might well take the prize for the most inadequate instruction I’ve ever seen…

Cherry Foster

 

 

 

Equivalent to “caused by the intervention of aliens?” A philosophy graduate’s ramble on “psychosomatic” as encountered in Western Medicine

Equus_quagga_boehmi wikimedia commons photo credit Hans Hillewaert, copyright attribution
Source: Wikimedia commons; photo credit: Hans Hillewaert

I lay alone on the narrow trolley in a side room in a doctor’s surgery, the door partly open, half fainting, dizzy, sick, frightened, more unable to see than usual.  I couldn’t sit up, and when I tried to wriggle – the necessary technique for raising blood pressure – I felt worse and kept kicking things, and was afraid of falling off the trolley.

Outside, I vaguely heard a voice say, “Is she all right?”

And another voice, cheerful, scornful, “Yeah, she’s just mental.”

How do you know?  You haven’t checked.

Besides, “mental” is most certainly not “all right.”

To this day, I remain puzzled by my reaction to blood tests.  Orthostatic hypotension?  Granted, I spend my life trying not to faint, but I’ve never been found to have that particular problem in any other circumstance.  However, while the mild symptoms of pre-syncope can be difficult to distinguish from other conditions, there is no mistaking it when it gets that bad.  When they finally got me up into a wheelchair, I pretty much fainted again, and had to put my head down: a typical and particularly annoying part of the reaction is that when I am finally able to get up I usually have serious problems again a few minutes later.

Whatever the reason for my body reacting to blood tests like that, it consistently has done so to a greater or lesser extent through several years.  To assume a disorder is psychological, because it is not immediately obvious what the physical cause is, is like attributing every medical problem that isn’t comprehended to the intervention of aliens.

Most people with complex problems have had them dismissed as psychosomatic at some point.  And when I say dismissed, I do not mean the doctor saying, “look, one possibility is that this is caused by something going wrong with things in the brain you don’t have voluntary control over.  I think it is worth referring you to a psychiatrist to see if that’s right and if it can be treated.”  I mean people behaving as if you were doing it on purpose and deliberately wasting their time, doctors blanking you out without answers, assuming what you say about the symptoms isn’t really true, assuming that if you have any sort of mental health condition any physical symptoms without obvious cause must be caused by it, assuming that if what you say doesn’t make sense to them it must be psychological – and therefore, not worth any medical effort.

For instance, I have a sight problem which behaves bizarrely and has no obvious cause.  Nothing is wrong with my eyes (fairly conclusively) and nothing shows up on an ordinary MRI (this doesn’t prove either a positive or a negative when it comes to the possibility of a neurological cause).  However, there are at least seven contraindications to hysteria: (1) age of onset too young (by current medical orthodoxy at least), (2) lack of sudden onset, (3) unintelligibility (conversion disorder usually mimics a socially understood condition), (4) failure of treatment for underlying mental health problems to affect the condition, (5) the experience is wrong – if it was conversion disorder, I’d expect to be able to see but not able to make use of my vision for any conscious task: it’s actually closer to being the other way around, with more wrong with the unconscious use of vision than conscious awareness, (6) this experience fits the pattern of a particular type of neurological fault, and I did not know this until I described it to a researcher into vision, who did not find it odd at all, and (7) I flinch when someone unexpectedly touches my face when I should have seen them coming.  On balance of probability the primary condition is neurological.

The same lack of obvious cause goes for most of my symptoms, and I find it extremely difficult to communicate with doctors as a result – because among other things I am often talking to people who don’t seem to believe what I’m saying is possible.  That is, I spend most of the time expecting people to switch off, assume I’m not really telling the truth, and as a result of this, it isn’t easy to actually tell the truth.  It isn’t easy to say, “yes, my wrist hurts, and so does pretty much every other joint in my body.  Oh, I can walk ten miles – it’s just that everything really hurts afterwards.  Especially my shoulder.  And I also find it difficult and uncomfortable to eat, and keep making myself really sick on tuna sandwiches.  And I keep falling over when I try to turn round.  And I keep losing my balance when I’m standing up.  And my feet won’t come up properly when I walk but if you press down on the top of them they are completely sound.  And I can’t tell properly when I’m thirsty.  And my vision is like looking through a waterfall anyway, but I keep getting things which look a bit like an migraine aura, such as little flashes of light.  Oh, and I can’t comprehend anyone speaking when there is background noise.  And I can’t control my voice properly.  I never get the volume right and either I’m inaudible or I shout.  But they tested my hearing and there isn’t anything wrong with it.  And this shoulder is going really crazy and hurts twice as much as usual but there is no loss of flexibility.  Yesterday it was my right hip that was doing that.  Though I did lose flexibility that time: I couldn’t actually put my toe in my mouth as a result.  And I have short term memory problems and I’m really struggling with that.  And mild tinnitus.  And noise hypersensitivity.  But only to some types of noise.  And mild photophobia.  And I have all these weird hayfever/skin allergies.  I used to be able to detect feathers in a duvet by my physical reaction to it, but that one seems to have gone off.  And I keep getting these random sensations – like stabbing pains, and pins and needles, and like insects walking all over me.  And I tend to sit with my feet turned in and they’re rather an odd shape (they are, but probably nothing pathological – though it worries me because they hurt).  And I seem to have a fatigue problem – I seem to be exhausted after doing nothing very much.  I get really tired trying to sit up.  I can’t maintain a good posture at all.  And I usually get presyncope when I stand up.  Or if I roll over to sleep on my back.  And I have chest pain.  On both sides in slightly different places.  And everything that doesn’t actually hurt is really uncomfortable.  Oh, and surprise, surprise, I’m rather depressed and anxious.”

Kudos to my current doctors: they did ultimately work it out.  HSD/hESD or similar.  A genetic fault in a protein that’s found all over the body resulting in complex multi-systematic issues.  And the fact that they thought (probably rightly) that I have problems which are psychosomatic didn’t cause them to stop looking for a physical cause for some of the other issues.  But most doctors have completely switched off before I get to the tuna sandwiches.

It seems to me that there is a set of layered problems when it comes to “psychosomatic” and its kindred phrases.  The first is the way people tend to attribute anything they don’t understand to “psychosomatic” problems, by which they often really mean “unreal”.  This was very apparent with the episode I had after that blood test, where the nurses kept going on about how they needed the room for another clinic.  Um, yes, what do you expect me to do about it?  Get up and faint properly on the floor so you have an excuse to call an ambulance?!  This attitude leads to a failure to investigate symptoms properly.

Secondly, “psychosomatic” is a sort of wastebasket taxon.  It isn’t something that is diagnosed because there are symptoms characteristic of it and none that aren’t.  It is something that is assumed whenever what the patient says doesn’t make immediate sense, doesn’t fit the patterns of the common causes of such symptoms.  The more so if you are depressed or have a history of mental health problems.  It tends to be assumed that the mental problems are causing the physical ones, not the physical ones the mental ones, and this is further confused by the fact that with something like HSD/hEDS, there may actually be structural differences in the brain that give you more of a tendency to depression.

For example, I do actually have seizures, distinct from the fainting, which probably are caused by complex post traumatic stress disorder.  It is impossible to be completely certain that it isn’t atypical epilepsy or one of the rarer causes of fits.  But, in this case, contrary to my visual problem, there is positive reason to think this phenomenon has a psychiatric cause.  (1) I have a clearly diagnosed condition which is well known to cause catatonic seizures.  (2) The seizures match the biologically expected pattern: i.e. they are rigid, wavy flexibility, locked-in fits, which usually happen only when I’m both emotionally stressed and also trying not to faint.  A lot of vertebrates have a last resort predator defence of some form of catatonic state.  It seems to be a way of avoiding eliciting a further hunting response from the predator, and of causing the predator to release their grip, allowing escape.  In CPTSD, the threat response system in the brain misfunctions (for instance, memories do not process properly out of the amygdala), and this seems sometimes to result in this catatonic state triggering in a disordered way.  Because low blood pressure is something that could also result from having been significantly wounded by a predator, it is logical that it should be part of the set of conditions that caused this mistaken response.  (3)  Doing things that should help, such as getting up and walking gently about, and reassuring myself that I’m safe, and trying to control any other symptoms like flashbacks, or simply leaving the situation, does seem to help.  As does treatment for the underlying disorder.

However, this is the same logic that would be applied to any other health condition.  It isn’t, as I said before of most things attributed to psychosomatic problems, like attributing what is not understood to the intervention of aliens.  It is using the same process of scientific logic as is usually used on illness to work out what it is wrong with the body.

Psychosomatic illness?  Yes, in that the cause of the problem is psychiatric.  Physical illness?  Yes too.  My body is misfunctioning on the mechanical level in a tangible way.

The third problem with the way in which psychosomatic is used in modern Western medicine is that it tends to be “diagnosed” by doctors who are not sufficiently expert in the field to tell the difference between a physical problem they don’t understand and the real physical symptoms caused by a psychiatric illness.  This is in part due to the extent to which mental health is not really treated with sympathy or given its fair share of resources.  Conversion disorder should only be diagnosed by doctors with the right expertise, just as much as something like EDS, heart conditions, or rare forms of throat cancer.

By the time I was agitating for a diagnosis of what was wrong, I was sure I had problems over and above the CPTSD.  This is mostly because the problems were getting worse while the CPTSD was, in its clearer manifestations, getting better.  It no longer made sense as an explanation.

I went to the appointments regarding the possibility of connective tissue disorder prepared to deal with the dismissive response that I’d previously had from a neurologist, which fortunately I didn’t get.  There are at least a lot more things that can actually be observed than there are with neurological problems: for example, that I am hypermobile can be seen by anyone who knows what they are looking at.  They don’t have to rely on my description of the experience.

My plan in case of blank dismissal was to say as calmly as possible: “does this mean you think that what I have actually got is conversion disorder?”  And if the answer was affirmative, to ask why they thought that.  And if they gave an answer amounting to “because I don’t understand it” to protest that this was not really an adequate reason.  Then, if I could not persuade them to look more deeply, or if they did have a positive reason to suspect a psychiatric cause, to finish with, “then could you refer me to a psychiatrist?  Or at least strongly recommend that the GP does?”  This would prevent the situation stagnating, of carrying on with a vague dismissal, but no clear knowledge of the real problem.  Whether I would have got anywhere, given the lack of resources for mental health, I have no idea.  I’ve also come across quite a few people saying that they were still having their physical symptoms dismissed despite a psychiatrist saying they didn’t have conversion disorder.

However, it would have been an attempt to put whatever the illness was back on the map of scientific medicine, taking it out of the realm of aliens.

Cherry Foster

 

 

Receiving Communion in an Epidemic: the practical side

I’ve written at some length in previous posts putting the view that the Church* should never refuse people the Sacraments in response to an epidemic, regardless of the situation, but that we should take a lot of precautions.  To refuse to allow people to receive is to accept a secular view of life and death, placing a risk to earthly life over the Divine Life given to the world in Christ’s Body and Blood, and is to insist that God should provide grace and deification by means other than those He chose to give us.  Not to take precautions is to put God to the test and to disregard His gift of earthly life.  I want to write now on what this might actually look like – firstly with regard to the reception of the Precious Blood, and secondly, with regard to how we might continue to receive when it is reasonable to suggest it might be preferable not to gather.

Firstly, the issue of the congregation receiving both the Broken Body of Christ and His Precious Blood.  The statement that sharing the Chalice in and of itself is dangerous puzzles me, as I’ve always thought they had done research on this point before, and found that it was not.  However, once one is into social distancing, it might be quite hard to receive it without people breathing over each other (in any case, it is probably better to offer an alternative anyway once people have serious concerns, as it is preferable that everyone feels free to receive fully and completely, as Christ Himself gave).

I do think it is preferable to share the Chalice, and I think there should be very good reasons to suppose there is a problem before we stop, but if there are real reasons not to do so, I think it would be a lot more reverent to turn to some other means of receiving in Both Kinds, than to deny the laity full participation in what is their offering as much as it is the priest’s (yes, we have defended Catholic order for certainly as long as I have been involved with the idea that the laity are as much part of the offering as the priest).

There are three ways I am aware of in which the Precious Blood can be reverently received without sharing the Chalice.  That is, intinction by the priest**, the use of individual cups, and the use of spoons.  There may be others.  Intinction by the priest is, I think, probably the best thing to advocate as a solution within the Church of England, but I will briefly discuss the other two methods first.

Receiving from spoons is what is done in the Eastern Orthodox Church, and I have in fact never seen it done.  I believe the Consecrated Bread is put into the Chalice, and then both are given by the priest on a spoon.  It is possible to use separate spoons, and boil them between services, but I am not sure how close it is necessary for priest and recipient to get, which may be a problem.  However, the method does have the advantage that it is not necessary for the recipient to touch anything with their hands.  I was quite paranoid, at the start of the epidemic when still in Church, over the issue of receiving the Host from my hands, thus touching my face after touching things like door-handles.  I took to slathering them with hand sanitiser a few minutes before receiving, which probably works ok***.  However, I would have been glad to avoid it if there was a better option.

I’m inclined to feel that receiving on spoons is sufficiently contrary to our tradition and what we are used to that it might be quite hard to adjust – which can disturb people’s worship and their capacity for reverence and spiritual growth.  This adjustment is potentially a concern with any alternative: I think in that case it is necessary for people to listen to each other as they go, and try to work out what people are actually saying – and to weigh the real reasons for doing something unusual with the extent of the problems it is causing – including spiritual difficulties, which should be accepted as real and important if we believe the relationship with God objective.

Receiving from separate cups is forbidden in the Church of England, for reasons that I haven’t yet been into, so I am not going to comment in theoretical terms, except to say that if it is the possibility of irreverence that worries people, it is surely more irreverent to deny people to receive fully than to receive in separate cups.  My main interest in the method is the potential it has for increasing social distancing, as it seems to me that if we used separate cups, which the priest put down on a linen covered table for people to pick up, it would be possible to put the Host down on top of each, and have each recipient drop the cup into a bowl of clean water after reception, lessening the touching of the same surfaces by different people.  On the other hand, most of this can probably be achieved by Intinction via priest as well, so if there are those who seriously disapprove of separate cups for some reason, there isn’t much reason to specifically advocate it.  (I would not, incidentally, encourage anyone to use separate cups while it is forbidden, but, if they wish to do so, to go and argue in synod etc. that it should not be disallowed).

Intinction via priest is, I think, probably the best way to try to go in the C of E.  It is something that is done in the context of hospital reservations, so it is reasonable to suppose it is allowed (though in the C of E, one never really knows)!  I have two comments about this.  The first is: if the fear with intinction by the priest is that it will result in the Precious Blood dripping all over the floor after the Host is dipped in the Chalice**** there is at least one way around this.  There are vessels which are used to give a drop of the Precious Blood to someone who cannot swallow solid food.  Using one of these would allow precise control, so no more is placed on the Host than it can absorb.  Secondly, if people still feel that receiving Communion brings people too close to each other, the Intincted Host could potentially be placed reverently down on an appropriate vessel to be picked up by the laity.  I realise this isn’t ideal, but if the option is excommunicating the vast majority of the people of God, surely it is still better?

This brings me on to the question of receiving when it is not a good idea to gather.  My feeling is that going this far is acceptable, so long as Communion is taken to everyone who requests it.  The logistics of this are obviously going to differ depending on place and what is going on.  There may, for instance, be times when, for example, celebrating Mass in gardens for less than ten people at a time would be realistic.  However, what I’m writing about here is mostly the sort of things that might be done during a more extreme lockdown, in the assumption that the lockdown has at least a reasonable medical justification in regard to infection risk, however much it may ignore other considerations both medical and otherwise.

Firstly, I would suggest that as many people as possible are employed in the task, to reduce the contact of any one person with too many others.  There are quite a few laity deployed normally to take the Sacrament to the sick.  Moreover, it should be possible to divide people into groups so, for instance, a person who goes to people who think they have the infectious illness never goes to anyone else (I believe the medical profession have done this sort of thing).

Secondly, I think the first thing that should be considered is normal home Communion using the same precautions which would be used by a carer who needs to go in to nurse and assist the sick and disabled.  That is, that the priest should do that liturgy as normal, using an Intincted Host (why not?  It matters to many of us who receive to receive the Precious Blood – that people should care about a gift He died to give us is a gain to the Church, not a loss).

However, in the case of certain services such as the Triduum, which are not really amenable to this, I would suggest streaming the service online and then sending people Communion, perhaps while broadcasting relevant music.

If normal home Communion, with the minister reading a short liturgy with the people involved is reasonably deemed a significant risk, I would suggest that people receive instead through a minimally open window or door.  Minister and recipient could both wear a mask until the window is closed.  With COVID-19, it might make sense for people to receive at arm’s length across a garden gate, as it seems to be pretty much non-transmissible outdoors, but this would mean not having the solid screen provided by reaching out to receive around a window or door.

Alternatively, it might be possible for each household to be provided with, or provides themselves with, a corporeal or other way of covering a table such that it is a reverent resting place for a pyx containing the Sacrament.  This table should then be put by an unfastened door or window, which the priest (or other person licensed to take Communion to people) can push open in order to place the pyx down.  The door or window can be closed, and the household can then receive from the pyx (while the minister watches, if necessary – though this might not be possible in every circumstance because it requires either an accessible window or a glazed door).

Either of these ways of doing things could be preceded by an online service or by distributing service sheets to people to use themselves prior to reception (there’s a liturgy called, I think, Communion by extension, which is quite a good one to adapt for this sort of purpose) .

Ultimately, the exact details of what people feel should be done to reverence the Sacrament in the process of unconventional reception of it, or what they feel should be done to try to avoid risk of infection, is likely to be different.  What I am really advocating is an attitude of problem-solving: that is, that instead of giving up, we should regard the worship of God and the reception of what He died to give for the life of the world, as something that should not be stopped or denied to any portion of the people of God.  We are failing in our witness to Christ, by placing earthly life before the Divine Life.  It is possible to do otherwise without resorting to an attitude of reckless disregard for human life.

Cherry Foster

 

 

 

 

 

 

 

 

*Where I am (at least to the best of my knowledge) it is the Church that has been responsible.  There are (as far as I know) no police blockades outside Church doors, no spies following the clergy about watching for violations of epidemic precautions.  It is their hands that have turned the keys in the locks, they who have declined to carry out their normal ministry in response to orders and threats.  As I write, incidentally, I, having been a daily Communicant for nine years, have been left with no access at all to either Communion or Confession for more than ten weeks – and this looks like it could easily continue for a similar length of time yet.  I am in a state of spiritual agony, to say nothing of struggling with temptations against faith itself (how far the latter is a result of the extent of the spiritual distress, and how much it is to do with the fact that what has been done seems to be a complete denial of everything I have been taught, it is difficult to tell).  There seems no sign of any possibility of this changing at least until I am able to receive the Sacraments in their fullness again – if by then it is possible for me to do so.  There comes a point in starvation where it is impossible to eat again due to the effects of the starvation.  As it matters in theory, in the need to be authentic to our theology, it matters in practice, for the sake of the Life of the individual Christian in Christ, and through that, for the Life of the World.

**Intinction by individual members of the congregation seems to be thought to be more dangerous than simply having everyone drink from it – but for the priest to put a drop of the Precious Blood on the Host from a vessel designed for that purpose cannot carry the same difficulties.

*** I have no strong opinion, incidentally, on the question of whether it is possible to actually pick up infections from the Body and Blood of Christ in their physically real element.  On the whole, I would be inclined to think one probably can: it seems reasonable to suppose that if Our Lord had had a cold during His earthly life, others would have caught it from Him in the normal way, and that seems to me to be as close as one could get to the circumstance.  But it doesn’t seem to me to matter very much because (a) even if one can’t catch anything from the Consecrated elements, one could catch it from one’s unwashed hands or from liturgical vessels, (b) I think any risk that cannot be reasonably negated ought to be taken in faith, knowing God has a much longer range perspective than we do, and has given these gifts for our healing even if it doesn’t look like it in the short term, and (c) thou shalt not put the Lord thy God to the test.

****It would surprise me if this was in fact a problem, but it is a concern I have heard raised over the priest dipping the Host in the chalice for the laity.  It would presumably be possible to do the experiment with unconsecrated elements?!

 

Posting the Camel

Camel wikimedia photo credit John O'Neill copyright to attribution
Source: Wikimedia, Photo Credit: John O’Neill

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.

Cherry Foster

See also:

Posting the Zebra

Why the Zebra?

#raisingawarenesstogether

Posting the Zebra

When you hear hoofbeats, think horses…

Nokota_Horses_wikimedia commons photo credit Francois Marchal copyright attribution
Source: Wikimedia commons; photo credit: Francois Marchal

but remember it could be an okapi:

Okapi wikimedia commons Photo credit Daniel Jolivet copyright attribution
Source: Wikimedia commons; Photo credit Daniel Jolivet

In other words, start by assuming a sprained ankle, but don’t assume someone is lying or has conversion disorder because the symptoms don’t make immediate sense!

Why the Zebra?

#raisingawarenesstogether

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.

Cherry Foster

P.S. And here is a zebra if anyone was expecting one 😛 🙂

Equus_quagga_boehmi wikimedia commons photo credit Hans Hillewaert, copyright attribution
Source: Wikimedia commons; photo credit: Hans Hillewaert

What Happened?

When did the UK become the sort of democratic dictatorship wherein innocent people have to wait on government permission to leave the house to attend religious worship, to visit a friend, or to conduct ordinary business?  Or even just to walk the dog a second time on the same day?

The fuss that would usually be made if someone not accused of any crime was placed under house arrest, allowed to go out only for limited exercise and essentials, and forbidden any religious ministry, for six weeks or longer would, I hope, be enormous.  More so if young children or people with serious health problems were involved.

Yet we (many in the UK) have already been in this situation for more than five weeks.

It isn’t ethically defensible to continue this policy, regardless of the possible or probable consequences of doing otherwise.  Return to normal civil liberty is overdue.  Being asked to take ongoing precautions while exercising these liberties is completely different.

We are going to have to learn to function normally in the presence of this disease: the sooner we do so, the less other damage there will be to make that difficult.

And if anyone is planning an appropriate act of Civil Disobedience – say, gathering in numbers on the local beach and walking about at least six feet apart, all wearing masks and gloves – I really would like to know!

Cherry Foster

Disability Adjustments and Lockdown: a comparison and a question

Suspending freedom to function for the sake of others’ need is a much more complex question than people seem to be allowing.  Here I consider it in comparison with what people are prepared to do to accommodate disability needs – though there are other possible analogies to explore such as what is and isn’t allowed in the criminal justice system.

There is an act in British law requiring institutions such as universities to make reasonable adjustments for disabled students.

However, “reasonable” can be very widely interpreted, and at my first institution it was considered unreasonable to expect lecturers to give me their notes on white paper.

The issues in living accommodation were worse: I had known dyspraxia and CPTSD, the latter in particular being well known to cause serious noise sensitivity problems, and yet it was apparently quite unreasonable to either place me in a student house with housemates prepared to be quiet, or to restrict the freedom of the other students by asking them to turn their music down or use headphones, in order to prevent their fellow student and housemate becoming seriously ill.  Similar difficulties are present with noise sensitivity in wider society: I lived briefly with a girl who was normally ill for several weeks around 5th November due to issues with fireworks, and I have heard someone with autism say that they had been on the verge of suicide due to a neighbour insisting on playing a musical instrument repeatedly in the middle of the night – the authorities insisting that it wasn’t loud enough to be regarded as an issue.

Issues with what you can ask others to do or put up with in order to accommodate the needs of others are complex, and I would not advocate a simple answer.  If there is one thing that is necessary to truly include anyone with extra or unusual needs, it is the acceptance that other people are still allowed to have problems and difficulties and needs too.  Community really can’t function if one person’s needs become completely invisible and irrelevant as soon as someone else is perceived as having a greater need.  The balance between normal freedom to function and the way in which what one is doing or not doing adversely affects others has to be maintained.  It is one thing to require the strong to bear some of the burdens of the weak, but the strong do not have infinite strength, and can still be overloaded.  It’s possible to have real and acute needs which it is genuinely not reasonable to ask people to meet due to the cost to themselves: an extreme example of this being people who need organ donations not being able to require them from live donors.

However, if this is so when it comes to disability and illness and need in normal times, it applies to an epidemic too.

I think that I would suggest our lockdown response to the COVID-19 epidemic is rather inconsistent, when it comes to the limitations generally placed on the ordinary adjustments made for disabled people on a day to day basis.  This is not simple because there are all sorts of reasons for advocating lockdown other than the protection of people at high risk from the disease, and a lot of the problems with disability adjustments come from a lack of understanding, rather than an unwillingness to make effort, or have freedom to do certain leisure activities restricted in some way.  Moreover, I think most people would argue that my university was wrong and should have made the adjustments I am talking of.  And what is justly required and enforced by third parties, and what it may be good for someone to do for others voluntarily, are different things.

I think, though, despite the complexities, requiring that people at low risk from a disease suspend all their normal activities and accept house arrest* on the specific grounds that it is to protect a different group of people who are at high risk of serious illness is problematic, unless it is also reasonable to ask a similar level of sacrifice and adjustment for those who have health and disability needs in ordinary times.

Cherry Foster

 

 

*This is slightly complicated: I personally have developed severe depression as a result of the lockdown, but I am thinking here of the people for whom it is unpleasant but not actually a threat to life or serious illness.

Lock-Down and Mental Health Treatment

People with significant mental health issues are having their health sacrificed to the welfare of a different group of people, and they are unlikely to be given the help they need when the emergency is over.

Ultimately, with the exception of a few details relating to my Christian world view, I refuse to judge whether or not the UK government has been right to place its population under virtual house arrest (it is only legal to leave your home for a few very specific purposes like buying food) in response to Corvid-19.  I am glad I am not having to make the decisions.

However, as someone with long term depression and traumatic disorder problems, it cannot be avoided that I am being made seriously ill by the consequences to me of the restrictions.  And while this is slightly qualified by the fact that those of us for whom this is the case are still vulnerable to the collapse of infrastructure, as someone who is at very little risk from the disease itself, I am being made significantly ill by policies enacted primarily for the sake of the health and well-being of a different group of vulnerable people.

People often seem to underestimate depression – or rather, I think they confuse the minor forms with the severe, and assume that all depression is a matter of a bit of low mood which could do with a little bit of counselling and self-help.  It is quite right those things should be provided, but on the other hand, the fact that some people only need a bit of cream for their skin rash does not mean that all skin cancer is dismissed as a minor illness for which only minor measures are needed!

Given my tendencies, I have reached a point where I am desperately trying to process my emotions enough for the situation not to result in further traumatic disorder, but to keep them calm enough that the depression does not put me in hospital.  Though I’ve been out walking every day, I am concerned that I’m starting to develop a real (and potentially persistent) fear of going out, and I’m really struggling with my self-care, to the point that social services is having to step in to assist.  I am too fragile to communicate with people much, and this is particularly frustrating as it cuts me off from a lot of online things that would be helpful if I was well enough to access them.  And though I am doing my best, and hoping it may be possible to find ways of coping, the chances are that my health is only going to get worse the longer the restrictions continue.

The fact that it is like this for me may be a result of idiosyncrasies in brain structure that result from hypermobility disorder, though I am not sure how well established that suggestion is.  In any case, it is an illness like any other, not a matter of wilful weakness or simple ineptitude.  It can be responded to badly – in much the same way as a diabetic can choose to try to be careful with food or not – but it isn’t a choice or a failure merely to suffer from it.

At the present moment, I have excellent medical care (without which I would be much worse) in managing the immediate symptoms, from my GP, to whom I am extremely grateful.

However, there is a reasonable likelihood that I will develop long term problems – problems that do not ease with the easing of pressure – damage that will go on crippling and harming my life indefinitely, and this is not the province of a GP.  Even if I personally don’t develop long term issues, it is a reasonable assumption that there will be people who do.

What has been done has been done in an emergency situation, and as I say, I refuse to judge whether they are right or wrong to do it.  But the fact remains that there is a population of people whose health and wellbeing are being sacrificed primarily for the sake of the health and wellbeing of a different group of people.

When the emergency is over, will those who find that long-term damage has been done to their mental health by the precautions, receive prompt, automatic, adequate, expert care?  Or will there be no resources for them?  When they have suffered horribly in order that the health service may care for others with what is perceived to be a more urgent need, will they find, when that urgent need lessens, that they are the priority and that they will, without having to fight for it, receive the same care?  Will the health service then set up “field” mental health units and take on more staff to deal with the illnesses of trauma and depression and any others caused by what has been done by the government to deal with corvid-19?

From my previous experience, it is reasonable to project that the answer will be “no”.  We will probably be left to our ongoing suffering, perhaps with a little bit of very limited, non-expert counselling, and such as our GPs can do with medication.  Having been made ill by the precautions taken for others, we are likely to be abandoned to suffer from that illness.

Seriously, whatever else is right or wrong here, not regarding the serious mental health illnesses caused by precautions against the coronavirus as being due the same weight of medical assistance, is not right.

Cherry Foster