[Written just after the day in question – edited July 2019]
One Monday at the end of February, I went to Waitrose to do some shopping and have lunch (macaroni cheese – too hot, but delicious) before going to see a clinical psychologist. I asked work to refer me to see someone because I wanted to know whether or not I’m autistic, and it turns out I am. But now I know this (what I suspected all along), I am finding it hard to know what to do with this information – harder than I expected. I thought I would feel like I understood myself now, that I had a group to belong to, that now I know the reason (or maybe combination of reasons) why I am the way I am (as it were) that I would feel better about myself. But really I just feel the same, with the added complication of having to tell people about it. Well, I don’t have to, but it would be a bit weird not to.
I’m not saying it’s not a relief to know – at least to know that I wasn’t wrong, but I feel that it’s just another thing to add to my list of weirdnesses, rather than something positive – oddly, I felt more positive about autism before I was diagnosed with it. Maybe that’s just because I often see myself as a massive ball of weirdness – so how can autism be a positive thing if I have it? Also, you know, what if she just said I’m on the spectrum because my workplace paid her to assess me? I don’t know – I am being paranoid, and goodness knows I’ve been thinking I’m autistic for ages, so it’s not like the diagnosis was a surprise, but still, I’m not feeling how I expected to feel. I am ruffled. I think I need to talk to someone who will understand, but I’m not sure who that is.
The psychologist said if the term was still in use she would have said I have Asperger’s, but as it isn’t she says I am mildly autistic – this just means my intelligence and speech are good, but doesn’t mean that my autism won’t cause me any difficulties, in fact in some situations I might react just as ‘badly’ as people with who are moderately/severely autistic. I guess it just depends on whether or not I’m in a ‘triggering’ situation, one that I find particularly difficult to process sensorily (I think that’s the first time I’ve used that word)
by (the use of) the senses; by means of the senses; in relation to or in respect of the senses
I had an exercise test (also known as a stress test) on Thursday. I’ve been dreading it for a while, mainly because I was worried about coordinating myself on the treadmill. I’m not usually very good with moving walkways – escalators are a no no – because of my issues with balance/vertigo. But I had to have the test. I was hooked up (or rather clipped up) to the ECG holter monitor, and then I was supposed to do a lung function test before the exercise test itself, but the mouthpiece you’re supposed to blow into was too big to fit in my mouth! I have a very small mouth, so small that the dentist has to use the children’s x-ray plates when he takes x-rays of my teeth. They didn’t have child-sized mouthpieces for the lung function machine (although presumably there must be some somewhere in the hospital?) so my lung function was not tested.
So, on to the treadmill. This, you will not be surprised to learn, was not as bad as I’d expected in terms of coordinating myself. I found that the key was to not look at the treadmill but instead look at the ‘horizon’, in this case the wall. When I got on to the treadmill I had my blood pressure taken and an oxygen meter was put on one of my fingers to measure my oxygen saturation levels during the test. Oh, I forgot, the face mask – this was not much fun although it was interesting to see the new design of the masks. They are no longer rubbery and held on with elastic straps, but made up of a plastic bit to breathe through and the rest is material that wraps round your head. It was more like an old-fashioned gas mask than anything else. Not good for the claustrophobic, but then no masks are. At least it didn’t have that horrible smell the old masks had. Anyway, the point of the mask was to monitor my breathing during the test. Also during the test, my blood pressure was taken every two minutes. The technician doing this had trouble hearing my heart sounds, so it took her a few attempts to take it. This is normal for me – I feel sorry for the technicians/nurses/doctors because they seem to think it’s their fault, but no, it’s just me. And then I apologise for myself a bit.
I managed to get to stage three of the test. Each stage is three minutes long. The first stage is a normal walking pace, the second is a bit faster and the angle of the treadmill is adjusted so you’re on a slight incline, then the third stage is a brisk walk and a steeper incline…and I guess the fourth stage is brisker/running and steeper but I didn’t get that far. I think I got about a minute into the third stage. Then I had to stop and I was able to sit down and have a drink of water while my blood pressure was taken again and my oxygen levels were checked and probably some other things I didn’t know were happening.
After the test, the technician went to find the pacemaker technicians to see if they could see me – she didn’t explain why. It turned out they could see me if I waited a bit, so I went back to the waiting room and sat and listened to an amusing very upper-middle-class woman and her elderly mother in conversation. Then it was my turn to see the pacing technicians and they said that during the last part of the test, when my heart was working harder, it had gone into a “Wenckebach rhythm” which is where the lower chambers of the heart expand and contract at a different (slower) rate to the top two chambers. This can cause shortness of breath in some people (although some people are asymptomatic).
The irony of it was/is that it is actually my pacemaker that caused my heart to do this, because of how it is set up – one of the technicians did explain how this happens but I’m afraid I didn’t really understand it and can’t remember what he said. Anyway, they have changed the settings on my pacemaker to see if this makes me feel any better, but there are disadvantages to doing this. (1) the pacemaker will be pacing my heart more so my heart will (over time) become more reliant on it – this can actually make heart failure worse because the heart gets ‘lazy’ and weaker – just like a person who doesn’t exercise. (2) The pacemaker’s battery will run out faster because it’s working harder. I’m going back to the hospital in August so I will report back, and if the new settings haven’t made any noticeable difference they will change the settings back to the old ones.
I have always felt this, this lack of belonging. It meant things like: I wasn’t homesick. I have thought this a failing and a lack of humanity in me, but I just don’t have that need for people. Cold person.
I don’t feel like I own anything. Jack of all trades, a master of none: I know lots about a lot of things, but. This I also consider a failing.
I stick out – I’m the one spoiling the family photo (I am), the one with the different opinion, the one who doesn’t want to do the thing everyone else is doing.
As for belonging in my own skin: no, never that. Your body becomes your enemy – something other. My heart is doing this weird thing, my back is wonky, my ear is broken, my neuros are diverse. The me is separate to these things, although it is subject to them.
Something in me wants to be unleashed: The writer, the singer, that musician, the seer, the reformer – but it is bound, not only in this body, also by other people: what they say/have said, might think, have done. The walls between me and them. I hold my breath when I write.
As other scholars have noted, Brent-Dyer makes good use of the “illness/injury” plot device throughout her long series of Chalet School stories in order to symbolise a process of character change. Illness, disability or injury are used as catalysts to enable ‘difficult’ characters to reform. In addition, Brent-Dyer occasionally, particularly in the character of The Robin, employs the trope of the purity and innocence of sick children.
In this paper, I discuss Brent-Dyer’s use of these ideas in the pre-war Chalet School stories, including thoughts on how her own life story may have influenced this aspect of her writing. I examine the positive and negative implications of the ways in which Brent-Dyer employs ideas of illness and disability, and how this may have affected my own reading of her Chalet School books as a child and young adult living with chronic ill health.
In addition, I aim to explore the idea of books, and the Chalet School stories in particular, as sanctuary, and to briefly give some thought as to why Brent-Dyer’s attitudes to health and illness may have changed after the Second World War.
how experience of chronic illness affects how and what people with chronic ill health expect of themselves and their experiences (particularly medical interventions)
what expectations ‘healthy’ people have of how people with chronic ill health will experience medical interventions.
I tried to fit all that into the title but it was far too long! Clearly, this post is in no way scholarly or backed up by any kind of research. It’s just some thoughts prompted by a conversation I had with some colleagues at work the other day. Also, I should point out that when I talk about chronic ill health in this post I mean chronic ill health from childhood, because I think experiencing ill health in childhood carries particular connotations and ‘risk factors’.
The expectations of people with chronic ill health
Speaking personally and in relation to my own body, I basically expect stuff to go wrong, or at least be complicated in some way. My expectations/fears are that if I can have a complication from some illness I probably will, if a procedure can be made a bit more complex it will be (because my abnormal body demands it), if it’s not supposed to hurt it still will, if I’m having a blood test the nurse won’t be able to find the vein, my pregnancy will be complicated, etc. – because it’s me – that’s what happens, that’s what my experience has been. In fact (or to my mind, which is not necessarily the same as fact but I think it is), this view is totally logical: people go with what they know – my past experiences show me what my future experiences will be like.
I think this idea of being abnormal/complicated/problematic influences my expectations about myself even away from the area of medical interventions. If you think you are abnormal (yes, yes, I know…), complicated and problematic you are (I imagine) not going to have much in the way of self-efficacy, and be more likely to have lower self-esteem [but my positive thinking friends might argue that this is self-fulfilling prophecy – haha!], verging into self-hatred. Actually, I’m not imagining it: I have been there. It’s not the same for everyone with chronic illness – plenty of people I know who live with long-term ill health don’t (as far as I know) suffer from this degree of negativity towards themselves, but you can see how easily it could happen.
Thinking about this led me down another track – maybe this is where the idea of the ‘ill person as hero‘ comes into its own as a kind of defence against this spiral into self-loathing. No one wants their loved one to think badly of themselves, so one way to attempt to discourage or prevent these kinds of thoughts could be to build them up, leading them to think of themselves not as problematic but as overcomers of problems – which is what heroes are. It makes a lot of sense to me. Even though (as previously discussed) I still have problems with this idea of (e.g.) ‘heart warriors’, I guess it’s better than the alternative of depression and self-hatred. But perhaps there is something in the middle ground – a realistic acceptance of ourselves as we are: not as problems or failures, or heroes or warriors; ‘just’ human beings.
‘Healthy’ people’s expectations of how people with chronic ill health will deal with medical interventions
In my experience and that of some of my CHD friends, healthy people tend to think that we must actually suffer less during medical interventions and find them less traumatic over time, because we ‘must be used to it by now’, having had lots of previous interventions. Well, here is the news: we don’t. I have met a lot of people with various lifelong illnesses and it is very rare for someone to say that they find medical interventions less traumatic over time. In fact, I think for most people it gets worse. I have certainly found this to be own experience; partly because as an adult I now understand more about the consequences of interventions going wrong, but also just because of basic stuff like I know X procedure is going to hurt /be generally unpleasant- there’s no two ways about it. Therefore I fear it not less, but more. Knowing about bad things doesn’t necessarily make them any better in terms of how traumatic they are (although having said that it does mean you can perhaps employ your own interventions (coping mechanisms)) if you have any and are able to.
As far as I can tell, this idea of people being better able to cope with bad experiences if they’ve previously had bad experiences seems to be exclusive to the area of long-term ill health and medical interventions. You wouldn’t say to a child who’s fallen over and broken its leg, ‘Oh, it’s OK because because you’ve done it before, don’t be a baby’, (or maybe you would if you’re a horrible person), but this is what people expect of children (and adults) with chronic conditions requiring medical interventions, even those not necessarily related to their conditions. Somehow, because your life revolves (or has previously revolved) around hospitals, needles, drips, catheters, tubes, people with masks on their faces, etc. you’re expected to deal with these again (possibly in a totally different context) and be OK with it. I have literally had a doctor say to me (as a 30-odd year-old woman) ‘don’t be a baby’, because I was freaking out about a blood test (that he was basically incapable of doing due to his own incompetence). Yes, I was 30-odd years old, but ‘hello, brain with your excellent fight or flight reflexes!’. We know bad stuff is going to happen – you can’t fool us with your cheery colourful scrubs or your vampire lanyards (phlebotomists, this means you).
So where does this leave us? Well, firstly we (I) need to find that middle ground of liking ourselves as we are – not as extremes of humanity as problems (villains? That’s a whole other blog post!) or as heroes. Secondly, people who haven’t experienced life long ill health and/or repeated medical interventions need to stop assuming that people who have are going to deal with these things more easily than ‘healthy’ people. It would make everyone’s experiences better. Thinking on this has improved over the years – there is now much more focus on how people’s mental health is affected by long-term physical health conditions (e.g. see Liza Morton‘s work with people with CHDs), which just wasn’t considered when I was a child (as least not in my experience).
Interestingly, a third thing that came out of the conversation with my colleagues was that I assumed that ‘healthy’ people would actually find medical interventions more traumatic than people with repeated experience of such things – so I am actually being a total hypocrite, if you think about it! 🙂
I had my third wisdom tooth out yesterday. The local anaesthetic injections were the worst bit. I didn’t cry as much as when I had the filling in June. I kept the tooth, although now I’m not sure what to do with it.
All credit to the dentist who was very good – he was very calming and explained everything before he did it, both what he was going to do and why he was going to do it. This helped a lot. Also, it didn’t hurt once the injections had kicked in. There was noisy cutting, as he had to cut off the top of the tooth before he could take it out – it was in a position similar to the one in the illustration above – leaning on the tooth next to it. I didn’t like the noise (who does?) but it wasn’t for very long. I didn’t commit any violent acts* and I wasn’t rude to anyone, so that was a triumph of sorts. Now I am trying not to do anything to make the wound bleed more, although I suspect I have already not rested enough. It’s surprisingly tiring having one tooth out!
*I’m always reminded of this quotation when I go to the dentist:
Hermione Granger: “My parents are dentists. They tend to people’s teeth.“
Horace Slughorn: “Fascinating. And is that considered a dangerous profession?”
Hermione Granger: “No. Although, one boy, Robbie Fenwick, did bite my father once. He needed ten stitches.“
Last Sunday, I made my first contribution to a zine. I went to a zine-making workshop; part of a series of events connected to the Sick! exhibition – an exhibition about living with invisible illness created by…artists living with invisible illness. It was really fun and very therapeutic, and that was just the chat! I am not really arty (as in, I can’t draw), but zines don’t have to be about drawing, writing is good, and collage, and all sorts as long as you can print it on paper/card. I enjoyed creating my page for the zine but the best bit was meeting other people living with a wide variety of invisible illness (although anxiety and depression seemed to be a common theme, alas) and sharing our experiences. I felt less like an alien when I went out than when I went in.
It is ridiculous, really, because I read stuff about chronic and/or invisible illness all the time, I know lots of people (at least online) with congenital heart defects and others with anxiety and depression (more of them in real life, some of them the same people) but I still find myself feeling like I’m the only person going through such things. I guess it’s those ‘dark night of the soul’ moments (if only they were just moments); it’s very easy to feel alone when you’re in the slough. Since I went to the zine-making workshop I’ve tried to think of the people there who were such excellent examples of how to live with chronic illness and take inspiration from them to get through some difficult moments. It has helped.
Anyway, here are some pictures of zines and zine-creation:
Test page before printing on the risograph
Test page after printing
In a very small way, I did something I’ve been wanting to do for years – make some art out of my medical records (photocopy of an ECG as background). I hope the page is OK – I think I should have done the writing and the background as two separate pages and then the risograph is used to put the pages together (see picture with stick person in, above). But I expect Xtina can make it work, somehow, for she is a printing genius!
Thanks very much to Xtina, Zara and everyone at INTRA for a lovely, creative, and useful morning.
I made this graphic (using WordArt) because I wanted to see how many positive words I could think of when thinking about my heart defect. So I just made a random list of words that sprang to mind when thinking about it, put them in a heart-shaped word cloud and categorized them using colour. As you can probably tell, the black ones have negative connotations, the blue ones are (sort of) neutral and the red ones have more positive connotations – all according to my subjective viewpoint, of course.
Once I’d finished the word cloud I realised how childish it is: the use of the word ‘tablets’ instead of ‘medication’ (or even medicine); ‘teddy’, ‘pricking’ (this refers to my sternal wires pricking me inside my chest – it happened a lot in my teens/twenties; not so much since the old wires were removed when I had surgery in 2008). You might be wondering why ‘picnics’ is in there. This is because when I was a child we always went to Harefield Hospital for my annual check up in the school summer holidays, and we always took a packed lunch and ate it outside. The ‘birds’ come from that, too – I remember the sparrows used to come and peck at our sandwich crumbs. I guess the childishness is explained by the fact that a lot of my thoughts to do with my heart defect are also to do with my childhood.
I think it’s quite encouraging that I managed to list so many positive or at least neutral words. When I first made the cloud I thought it was overtly negative, but then I realised lots of the words in the list are simply things that are just there – they are merely part of the experience of having a heart defect; not bad, not particularly good either, just there (bedpans, tests, screens, wires (although wires are bad if they hurt you)). Some words are a bit ambiguous – e.g. ‘parents’. I made them blue even though it is not really the case that they are ‘just there’ (and I’ve just realised I forgot to add ‘guilt’ to my cloud), partly because it seems the most diplomatic thing to do. ‘London’ is there because it’s always been the background to the story of my heart. When I was in hospital in 2008 I drew a picture of the skyline I could see from my window (hence also ‘drawing’) and at night when I couldn’t sleep I pretended the shapes I could see were animals instead of cranes and tower blocks.
I put ‘waiting’ in black, because I’m impatient. I think the other black words are self-explanatory, although some things like catheters and stitches are not really bad in themselves (they are there to help us) they are not very pleasant to experience.
This is a picture of a picture of me in our then garden when I was about four:
In case you didn’t know, I hate having my photo taken and I almost never wear make up. A few weeks ago I decided it would be a good idea to volunteer to have my picture taken for the Somerville Foundation’s second Scarred for Life exhibition. This involved having my photo taken and wearing make up…and having my hair cut (a bit) and straightened (which I actually like). I was nervous about the process of having my photo taken, but it wasn’t so bad. I didn’t really feel like ‘normal me’ because my hair looked so different, so I didn’t feel like I wanted to hide like I usually do when face to face with a camera. I did, however, find it more of an emotional experience than I expected. I had…