Stuffed eggs and school: a post for Anti-Bullying Week

“Eating, and that feel of food in the mouth, is all part of comfort and affection and warmth, and I think that a lot of the reason that I turned to food was because I was actually quite a lonely child.”

Nigel Slater

It might not come as a surprise to learn that my earliest memory of school involves food. Stuffed eggs, in fact. [The link goes to a recipe for devilled eggs as I can only find one that is actually called ‘stuffed eggs’ – see below.] The memory is blurry, but there was definitely hard boiled egg and salad cream involved; the egg being chopped into little bits and mixed with the salad cream and then…what? Stuffed back into the egg? I guess so. As the cooks were five years old,  I don’t imagine there was any mustard or paprika involved, as is the case with actual devilled eggs. There may have been chives, but I could have imagined that.

[Aside: while researching recipes for stuffed eggs I found an interesting site about medieval cookery. Worth a look – and contains the only reference to stuffed eggs I could find. My favourite version of the medieval recipe for stuffed eggs is this: Source [Liber de Couina (Medieval Kitchen #118)]: Eggs: to prepare for stuffing. To make stuffed eggs, cut each one in half when it has been well cooked and [is] thus hard. Then remove the yolk and take marjoram, saffron, and cloves and mix with the yolks of those eggs; and mash it thoroughly, adding a little cheese. For each eight eggs, add one raw egg. This done, fill the egg whites with this mixture. And fry in good pork fat, and eat with verjuice. Mainly because I like the sound (literally and metaphorically) of verjuice.]

After this, my next memory of school is being knocked over by a bigger child running in the playground (I mean they were running, not me). I was just knocked over and fell down the steps, ending up with, ironically, given my previous anecdote, a lump the size of an egg on my forehead. Fun times. As you may have gathered, I wasn’t a massive fan of school. But the problem wasn’t the schooling (apart from PE, which I saw as pointless and just something made to showcase my failings and the other children to bully me/laugh at me as appropriate. The problem was the other children.

I spent my school days avoiding all the children I was scared of, and having my learning interrupted by teachers having to deal with kids who didn’t want to learn. Things got better in the Upper Sixth (I am old – this means Year 13), when the kids who didn’t want to learn had finally escaped, but the bullying didn’t stop. Human beings are, after all, animals, and animals attack and/or reject any one of their kind who is different, it’s just animal logic/instinct. I remember, at my second primary school (we’d moved house) looking at the other children in my class and wondering what it was like to be them, to be normal. I think I was about seven years old at the time.

Not being seen as ‘normal’ makes you feel something other than normal – it’s a bit of a viscous circle, as many things seem to be. As adults, most people learn that there is no such thing as normal, and that maybe normal isn’t something we need to strive for, and even that it might be a good thing to be a bit different to the rest of the pack. But children, and, I suspect, some (most?) adults, don’t have this insight. To them, there is a normal and a not-normal – the dreaded word ABNORMAL. At least we don’t use ‘subnormal’ anymore, at least not in polite conversation. The normal children look a certain way, have the same(ish) physical abilities as everyone else and something else. The not-normal ones are the ones standing on the edge of the circle, in cliche of on the outside, looking in – often literally and always metaphorically. 

“…her memory is of an intense humiliation about being different, a shame she took upon herself”  

Kate Bull, Open Hearts

When I read this, I thought yes, it is a shame and humiliation. You feel this yourself and then other people make you feel it even more. Once, when I think I was about seven, a teacher asked me if I wanted any help using a pair of scissors. I was quite taken aback, as I was perfectly capable of using scissors on my own. In my young mind I thought she was asking me if I needed help with the scissors because of my heart condition, and I felt embarrassed about this, like it was an insult to my intelligence. Thinking this made so sense at all, really, but I think I associated my heart condition with not being able to do things, and I felt that the teachers did, too. Being intelligent was (and, I suppose still is) important to me, because I felt it was my one strength (and I still do, to a certain extent although now of course I don’t think myself as clever as I did when I was six).

I was…unusual…in ways that weren’t obviously anything to do with my heart condition, ways that I now think were early signs of being autistic. I was very slow and changing for PE – even into high school, I could never learn to swim, I was massively anxious about many things, particularly people pushing me or being too near me, being hit by flying objects (balls), couldn’t skip,couldn’t climb, couldn’t skate, couldn’t jump off or on to things, had no balance and little coordination. I often felt that I was the only one who couldn’t do things – it happened a lot – forward rolls, plaiting hair, skipping.

I preferred to talk to the teachers and dinner ladies rather than other children, although I did have some friends. I had trouble with ‘frenemies’, though – although the word hadn’t been invented yet. One particular ‘friend’ at primary school apparently used to bully me – although I can’t remember any of it, my mum noticed and ‘had a word’ with this friend’s mum (I don’t remember that either). I was a bit ‘forward’ with adults – people said I was cheeky, but I just talked to them like they were my peers. A lot of my social life, such as it was, was with adults – I sang in a church choir and later in a choral society that was mainly made up of people my parents’ age or older.  I went to Brownies but I didn’t like the other girls and they didn’t really like me either as far as I could tell, so I didn’t move on to Guides.

I accepted my lot  – in a way it seemed logical to me that I would be bullied and left out and feel different. I was different, there was no point me making a fuss about it – everyone else was doing enough of that. I accepted that this was the way of the world, that I was going to get bullied because I was me, I suppose. That was my childish logic – my adult logic is that it’s human nature to ‘other’ people – people fear difference and are afraid of being different themselves, so in turn they try to ostracise the other, I suppose ultimately they want us to go away and stop messing up their normality. Is that really it?

Anyway, it’s Anti-Bullying Week this week, so go and learn about it and give your support to the Anti-Bullying Alliance. I live in hope that one day people will be more tolerant of those who are different – and I think in some ways, things are better than they used to be, but there is a long way to go yet.

Aliens

I think there is a burden of responsibility for children and adults with congenital heart disease (CHD), which is related to the idea of ‘heart warrior’ or ‘sick person as hero’. We feel a duty to be/act as normal as possible now we are ‘fixed’ by whatever surgery or treatment we may have had and back in society/back to school- back to a ‘normal life’.

Sandeep Jauhaur, in his book Heart, relates the story of Jacqueline Johnson, who, in 1952, was the first person to have “hypothermal treatment” (cooling down the body to hypothermic levels in order to slow down the heartbeat enough so that the heart can be operated on). He ends the narrative by saying, “By the end of the month, she was just another girl at school”.  Jauhaur shows no thought for  the girl’s feelings or aftereffects of surgery. Jacqueline is never going to be “just another girl at school”. Even if she appears that way to her parents, doctors and even her peers, I seriously doubt that she would have had no psychological reactions to her surgery, or that she would not have been seen as ‘different’ by her peers and treated as such when she returned to school. It is possible to do ‘normal’ things with CHD, but, for better or worse, your outlook on life is probably not going to be the same as the people around you.

[missing school and being slow] “served to underline in some young minds that there was something fundamentally ‘wrong’ with what they were” 

Kate Bull, Open Hearts

Somewhat miraculously, I didn’t miss a massive amount of school, but probably more than most of my peers.  Almost every cold would turn into a chest infection, which meant days of lying on the sofa, taking lots of antibiotics and having physiotherapy on my chest – this latter involved me lying tipped sideways over on a heap of cushions and my mum slapping on my chest to try and loosen the mucus in it so I could cough it up. Yes, it was as tiresome and disgusting as it sounds. When I got better enough to go back to school my mum would come into school at least once a day and do my physio in the medical room (I think it was). I don’t know how she managed this, as she worked a lot when my brother and I were school age. But she did. I found it boring and annoying and obviously it did nothing for what little street cred I had. No, actually, I didn’t have any to begin with so that probably only mattered in my head! But I was slow. I was the stereotypical ‘weakling’ kid – the one with no coordination whom no one wanted to pick for their team. I still look back in some dismay at the fact that the teachers actually let pupils pick sides for games – it was an utterly humiliating practice for anyone who wasn’t good at sports, or unpopular or, you know, me. I really hope they don’t do things like that anymore. 

In any case, all this being different does make one think there is something wrong with what one is. People are basically telling you, either kindly (medics, parents) or cruelly (school bullies), that you are not the same as everyone else, that you are ‘other’. I think it is only a short step from there to self-doubt, low self-esteem, low self-efficacy, and at the worst end of the scale, self-hatred. And then if you add in the lack of attunement/attachment experienced by babies and young children with CHDs, it doesn’t paint a very happy picture. 

In their study Cornett and Simms (2014) found that, for adults with CHD, “The desire to have a ‘normal’ life was profound”. There are some pretty heartbreaking quotations in their article, from patients like George, who said:  “I’ve always felt I’m faulty, I don’t fit in…you’re an outcast…I’ve always felt like a reject”.  I have to say, George does a good job of expressing how I’ve felt on many occasions during my lifetime. It is something I haven’t really talked about with my parents or friends, apart from saying seemingly silly things like ‘I think I might be an alien’ – but at times I really mean this. Actually, most of the time. Again, I realise this sounds dramatic; ridiculous even, but the feeling of alienation for people with any chronic illness or disability can be this severe. “…[T]he patient’s perception [is] that their world is at conflict with that of their healthy peers” (Cornett and Simms). 

“…a transformation of the essential conditions of their being in the world. They have become aliens, even exiles in their own land.”

Robert F. Murphy, The Body Silent

It wasn’t all bad. I was secretly glad of some of my differences. When it was very cold, I didn’t have to go outside at playtimes. This meant peace and quiet for me and no need to try and join in any boisterous games or spend the fifteen minutes avoiding projectiles – footballs: I hated them. And of course, not having to do “the run” was a bonus. “The run” was a PE lesson we had at secondary school (ages 11-14), during which we had to run around the nearby park and through a bit of town and over the hills and far away (when we got to the senior school (14-18 years)  that was on the outskirts of town. But these things, along with the way I looked, my ineptitude at physical activity, and my scars, and my time off school for hospital visits, and the fact that my mum had to come into school to give me physiotherapy, all made me not-normal, an alien, in the eyes of my peers. The teachers were, on the whole, kind and careful; but this didn’t always help me not to stand out, or at least feel like I did.

Apart from “the run”, I participated in everything else the PE teachers threw (not literally) at me, to the best of my (in)ability. The problem wasn’t just that I tired easily – in a way that was the least of my worries – at least it would have been more excusable. However, I also had/have terrible coordination, bad spatial awareness and a tendency to run away if a ball comes flying through the air anywhere in my vicinity. So PE was rather a write-off, until Year 11 when we could choose what we did and I spent many happy hours playing badminton or tennis with my best friend, H. Also, tennis. Don’t ever play tennis with H. Her tactic was to whack the ball as hard as possible. In theory, I probably won all the games I played with her because she hit out so many times, but we never really kept score.

Photo by Kevin Mueller on Unsplash

Vanilla ice cream

In any case, here I was sitting on my bed in a hospital children’s ward, eating very yellow vanilla ice cream. We had similar ice cream at home when I was growing up, and my main memory of it in that context was that it was nigh on impossible to get it out of the tub! Soft scoop indeed! And none of your ‘real vanilla pods’ here (apologies, Nigel) – this was proper vanilla ice cream, bright custard yellow, as it should be.

Two things stand out from this hospital visit (I can’t remember what it was for – it may have been heart surgery, or it may have been some kind of invasive test). The first thing that sticks in my mind is of course the ice cream. I would also like to take the opportunity here to mention hospital grade mashed potatoes. They had a particular smell, which was actually delicious and mouth watering to a hungry child, which I now recognise as belonging to instant mash. I guess it saved someone the trouble of peeling hundreds of potatoes. I still love instant mash, its smell and taste, and eat in on a regular basis – not all brands smell the same, though. The cheaper the better, I think.  The food in hospital arrived, much as it does now, in a stainless steel contraption on wheels, a giant hot cupboard. I was always so relieved to see the hot cupboard appear on the ward.

The second thing that has stuck with me about the ice-cream eating, is a little girl like me, a similar age. I think she was called  Elizabeth. I only have vague memories of her, just a shadow of a person; company for a change. Elizabeth is only significant in that I remember her at all, not because she said or did anything memorable at the time. I suppose there must have always been other children in the wards, but I only remember things as happening to me on my own. Yes, it is a very passive voice. (I once read that you should use the passive voice as little as possible when writing, but I am breaking all the rules here, Fay Weldon. (Also, at this moment, I am not writing a novel). Things happened to me, as a child, on my own. Memory and the experience of ill health shrinks the world to only what is happening to you – your pain and suffering, your boredom, your endless waiting for things to happen. But this is not the case with the eating of ice cream – I wonder if it’s significant that this was something enjoyable so my universe widened out a little and let someone else in to share it.

I’ve often wondered if I’ve ever unknowingly met Elizabeth again on my travels through clinics and hospital corridors. 

Vanilla ice cream with coloured sprinkles in a bowl covered in coloured sprinkles
Photo by sheri silver on Unsplash

Some baffling misdemeanour

“If they are not given any understanding of why unfamiliar people are doing alarming and horrible things to them, children often think they are being punished for some baffling misdemeanour”

(Kate Bull, Open Hearts, p.107)

I can imagine me doing this. Even now, I assume I have done something wrong if that’s at all possible to do in the situation I’m in. As a minor example, if someone doesn’t reply to my email, I think it must have been something I said. I remember, as an older child/teenager, raging against nothing because I felt I was always being punished for some unfathomable crime I hadn’t committed.  It’s not just that medical procedures can seem like a punishment, but also having the illness/defect in the first place. I never asked, ‘why me?’ in so many words, because I think, as Professor Umbridge says in Harry Potter and the Order of the Phoenix, “[D]eep down you know you deserve to be punished”. [At least she says this in the film, I can’t remember if she says it in the book as well.] I guess it was a way of trying to rationalise things that had no ‘reason’ for happening, at least no reason in the moral, non-biological sense. As children, we’re taught that bad things will happen to you if you do bad things or, worse you are bad. I think the feeling of being bad, being guilty of something, being wrong, being fel, is probably part of depression and probably also part of what makes one depressed, so it’s a bit of a vicious circle really. You/I/one can never get quite right with the world – we don’t fit into it like everyone else seems to. 

And you can see why any child might see medical treatment as a punishment – I would not be surprised if adults did either. Various pieces of research carried out with children dna adults with congenital heart defects/disease (CHD) has shown that people in the CHD population are several times more likely to develop post-traumatic stress disorder (PTSD) than the average person: A study carried out by Meentken et al, in 2017 showed that 12-31% of children undergoing cardiac surgery develop PTSD and 12-14% show elevated post-traumatic stress symptoms (PTSS) (Morton, 2019). Deng et al (2016) found that 11-21% of adults with CHD had PSTD compared to 3-5% in the general population (Morton, 2019). 

This is hardly surprising, even if we only look at one aspect of what a person with complex CHD generally goes through. Children/teenagers (I don’t know up to what age this is considered acceptable) are forcibly held in order that they can receive medical treatment. In a study by Bray et al (2015, 2018)  81% of medical professionals reported children being forcibly held frequently or very frequently despite potential fear of future procedures and contribution to PTSD, and in defiance of professional guidance, which states that “Clinical Holding” , as it is known, should be a last resort (Morton, 2019).  To make matters worse (possibly), it is often the parents of the child who are asked to forcibly hold them, potentially leading to fear and/or distrust of the parent.  Van der Kolk (2014) says, “Immobilization is at the root of most traumas” – it is easy to see how children with CHD develop PTSD or other post-traumatic stress reactions. 

To make matters worse, “…each developmental stage comes the risk of experiencing psychological and emotional difficulties that may result in a ‘cumulative’ deleterious psychological impact…” (Cornett and Simms, 2014). Because congenital heart disease is always with us, the people who have it, and our families and friends if we’re lucky enough to have any, there is no end to the risk. It is a chronic condition. Sometimes, a defect is mended and the person only has to check in with their cardiologist once a year, and never has to have any further surgeries or procedures, but this is quite uncommon. Most people with CHD need lifelong follow up outpatients’ appointments at least, and many require further interventions and possibly further surgeries throughout their lives. It can easily be surmised how these experiences could “result in a ‘cumulative’ deleterious psychological impact…” (Cornett and Simms, 2014). 

“Children who don’t feel safe in infancy have trouble regulating their moods and emotional responses as they grow older” (van der Kalk, 2014). Although I’ve been diagnosed as being “mildly” autistic I sometimes, well, often, wonder whether my ‘symptoms’ are actually a reaction to not feeling safe in infancy – or possibly symptoms of post-traumatic stress.  Although I disagree with some of her points, I find Holly Bridges’ (2015) idea that autism could be a reaction to childhood trauma an intriguing one. She argues that the Polyvagal Theory suggests autism is a learnt response by the body – a result of the child being in a prolonged state of ‘fight or flight’ while their nervous system is still developing. 

Cornett and Sims (2014) make the point that this emotional impact on the child often remains hidden. Sick children are told to be brave,  to be ‘good’ for the doctors and nurses, even when it is totally unreasonable to expect them to do this. They (or at least we, I hope it’s better for sick children nowadays) were taught to suppress their feelings, emotions and negative reactions to medical treatment. Morton (2019) suggests that ‘rewards’ such as bravery stickers, only serve to reinforce this narrative and could encourage children to suppress their feelings instead of talking about and trying to deal with them in a healthier way.

The idea of ill children being brave fits into the wider ‘sick person as hero/warrior’ narrative that is so prevalent today. More of which another day…

References

Bridges, H. 2015, Reframe your thinking around autism:  How the Polyvagal Theory and brain plasticity help us make sense of autism. Jessica Kingsley Publishers, London.

Bull, K. 2016, Open hearts: stories of the surgeries that change children’s lives, Elliott and Thompson, London.

Cornett, L. & Simms, J. 2014, “At the ‘heart’ of the matter: An exploration of the psychological impact of living with congenital heart disease in adulthood“, Journal of Health Psychology, vol. 19, no. 3, pp. 393-406.

Morton, L. 2019, “Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper”Journal of Health Psychology, vol. 25, no. 2, pp. 197-206.

van der Kolk, B. 2014, The Body Keeps the Score, Penguin Publishing Group, East Rutherford.

Image by inspiredbythemuse via Pixabay

Growing older with a congenital heart defect: a seminar

Last Saturday I and about 25 other people with congenital heart defects attended a half-day seminar about getting older with a congenital heart defect, run by the Somerville Foundation. It was held in the illustrious surroundings of South Kensington, at Imperial College, right near the museums. I hadn’t been to that area for years, and it wasn’t quite how I remember it – it was in fact much nicer and easier to navigate. Perhaps there have been improvements – it seemed a lot more pedestrianised, which was good, and I have now found the nearest bus stops – also right next to the Royal Albert Hall. But I digress.

Much needed coffee

The seminar itself didn’t include anything unexpected, although it was still useful – it’s always a good thing to be able to talk to people in the same sorts of situations to you, if nothing else. The main points were:

  • People with congenital heart defects are (obviously) still subject to all the ‘normal’ health problems older people can expect to encounter. I think this is rather unfair, but there we are.
  • We (people with CHDs) need to be mindful that we are also more likely to develop certain conditions as we get older (e.g. type 2 diabetes, kidney and liver problems) so we need to try to take steps to mitigate this (i.e. eat healthily and exercise as much as we can).
  • We really need to make sure we have at least a summary of our medical notes on our person at all times in case of emergency or other hospital/doctors visits. Also, we need to try as much as possible to encourage any non-CHD specialist medics to liaise with our CHD medics otherwise there is a risk that they might do more harm than good. I’ve been very fortunate (so far) in that most non-CHD medics I’ve had contact with have been really good at liaising with the Brompton Hospital (where I have my CHD treatment/clinic visits), especially during my pregnancy and after B’s birth. However, some people have not been so lucky. We talked about the idea of advocates, which I think is a great idea, particularly as we get older and less able to fend for ourselves. But I guess the question is, who would do this? It might be a role for the Somerville Foundation, but they are a very small charity so I’m not sure how feasible this would actually be.
  • It seems that most people in the room had had (or were having) some issues (to put it mildly) with NHS administration. This is obviously a worry as we will probably need to access NHS services more and more as we get older. NB: I love the NHS but there are clearly issues that could be resolved fairly easily (she says) with a bit of forethought and patient-focussed systems/processes.

After the seminar we went to the V&A for (a very late) lunch, which was expensive but delicious. It was probably worth the money to sit in such beautiful surroundings (but I can only say this because I’m working full time and a lot of people with CHDs are not able to do this).

Dining room – Victoria & Albert Museum
William Morris Window, V&A restaurant

Exercise test

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.

valeriia-bugaiova-Kd3BSvLgUIo-unsplash
Photo by Valeriia Bugaiova on Unsplash

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.

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Me running – in my dreams. Photo by Sebastian Staines on Unsplash

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).

Karel Frederik Wenckebach.jpg
Karel Frederik Wenckebach By unknown – textbook, Public Domain, Link

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.

Lack

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.

This list of words is not exhaustive

Word Art (1)

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 list of words is not exhaustive.

The hearts of small children are delicate organs

“But the hearts of small children are delicate organs. A cruel beginning in this world can twist them into curious shapes. The heart of a hurt child can shrink so that forever afterward it is hard and pitted as the seed of a peach. Or again, the heart of such a child may fester and swell until it is a misery to carry within the body, easily chafed and hurt by the most ordinary things.”

― Carson McCullers, The Ballad of the Sad Café and Other Stories

Please don’t call me a hero

I’m re-blogging this post from last year because I found the post that inspired me to write it (I couldn’t think of it at the time for some reason): this post by Sarah at The Adventures of Ernie Bufflo: https://erniebufflo.com/2014/01/29/my-child-with-a-disability-is-not-my-hero/ – so please read this before you read mine! She is a great writer and expresses what I want to say (although from a different perspective) much better than I can!

The shape of my heart

This is a picture of a picture of me in our then garden when I was about four:

SAMSUNG CAMERA PICTURES

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…

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