Zine!

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:

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INTRA, where the action happens!
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A selection of zines for inspiration
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How to fold the paper to make a zine
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Pages from the finished ‘test’ zine
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My page for the zine

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.

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.

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:

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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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I went to the dentist today

I went to the dentist today to have my teeth scaled and polished (‘cleaned’) and then have a filling. It was not fun. There was a needle. I don’t like needles. There were loud high-pitched whirring noises. I don’t like loud high-pitched whirring noises. There were people standing over me with face masks on. You get the drift. I held the dental nurse’s hand. I gripped on to myself. I took deep slow breaths. I cried. I’m 39.

I have terrible teeth [in my terrible jaws – have I read The Gruffalo too many times?]. Not in terms of them being decayed (thank goodness), just in terms of their alignment, or rather lack of. They are very wonky – crooked, to go with my crooked back. It’s fun. (It’s not). It means I have to go to the dental hygienist to get them cleaned every six months, especially as, because I have heart condition, I have to be careful about infection, particularly in the mouth. I had endocartitis as a child and it was Not Good (as my daughter would say).

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Gruffalo by Tim Spouge

My teeth are crooked because I never had a brace. I was offered one, but I declined, because I didn’t think (aged 14?) that I could cope with the repeated trips to the dentist and fiddling about with my teeth that having one would have entailed. Or perhaps it was a matter of (for once) having the choice to be left alone or not, and I took the being left alone option, which I think is understandable.

Of course I regret it now. I know my teeth are horrible and I’m very self-concious about them, to the point where I will avoid smiling properly in photos. When I meet people I think about them thinking about how awful my teeth are – of course they may not be thinking this, but how do I know? And think of how many dental appointments I could actually have avoided if I’d had a brace so they were easier to clean.

Alas for the follies of youth!

“…a vital expression of the organism…”

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The above is printed in the front of Migraine, by Oliver Sacks. I’m reading this book for the second time. The first time I read it I was in my late? teenage years (a long time ago), and I remember that I actually started having a migraine while I was reading it. The irony (or something). It is a most fascinating tome, mainly because migraines are fascinating things but also because Sacks writes well and accessibly. But I’m not really planning to write about migraines or even Migraine today. This is really just a little note about the above quotation. I had two thoughts about it when I read it the other day:

1.

Whoever…sees in illness a vital expression of the organism will no longer see it as an enemy…

Both thoughts have to do with my acceptance (or not) of my heart condition. I have seen my heart condition as my enemy, to be fought against. I have not seen it as a “vital expression of [my] organism. But…

2.

…the disease is the creation of the patient…

I don’t think Groddeck means that the patient is inventing the illness; I’m taking this to mean that the illness is ‘just’ a part of the person, in the same way that the person’s walk, speech, facial expressions, etc., are a part of her/him. My heart condition is  a part of me, so (a) in fighting against it I’ve been fighting against myself (very tiring) and (b) I think I have been seeing it as something separate from myself, like an external enemy that might go away if I try hard enough. But it’s not going to go away. [In this week’s counselling session I realised that I’ve been holding on to a fantasy that one day my heart defect would just go away! This probably sounds ridiculous but when I said it I realised it was true, and might go some way to explain the non-acceptance of it.] I need to accept my “creation” as me. I’m not sure I need to like it, but I need to find a way of seeing it in the same way that I see my [trying to think of something I like] handwriting; not as something external to me, but just part of my whole self/person.

Is this making any sense?

 

Turbulent

For various reasons (work-related), I did the Myers-Briggs/16Personalities test again last week. Bizarrely, the results were helpful in explaining to me why I might be feeling this way. I am an INFJ with a side-order of Turbulence. Turbulence is the operative word.

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Turbulence

I think part of the problem is that, for most of my life (I have come to realise), I have been angry about a lot of things I can’t do anything about. As an INFJ (Advocate), I need a cause, and I have many ’causes’ (in my case quite hard-held beliefs/ideals) and I hate injustice. But I, due to a combination of my own weaknesses and The Way Things Are (the society we live in/my own circumstances which are not necessarily under my control) am unable to either progress my causes or right the wrongs I perceive. I may want/need “constant improvement”,  but I don’t get it, least of all from myself.

I started writing this post a few weeks ago, and, since then, as aforementioned, I have been seeing a counsellor. This has been helpful in several ways; one of which is that it has helped me to recognise that my turbulence manifests itself as inwardly fighting with myself about the things about myself and others that I can’t accept. My ‘wrongs’ are not necessarily (only) external factors, but also those things within myself that I don’t like (hate), my many self-perceived defects and failings, physical, mental and emotional.

If I want to become less angry I need to stop fighting and accept the things about myself that I don’t like/want; in particular, I need to accept my heart condition. I was reading the Somerville Foundation Facebook group’s page wall the other day and someone was talking about how they accept their heart condition and that they wouldn’t change anything [about it?]. I was like (in my head), ‘how can you say that? How can you accept something that’s bad and caused you loads of problems and misery etc?’ (or words to that effect). After all, who wouldn’t want to be normal if they could? But of course, as my counsellor continues to gently point out to me, there is no normal.

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Photo by Marcia Clrillo on Flickr (CC BY N-C 2.0)

I don’t know why I can’t do an Elsa and let it go – when I thought about stopping fighting against my heart condition, accepting myself as I am (which is a wider, bigger thing), I cried. I don’t know why – in a way it’s because I’m not sure there is anything else to me; maybe the fight is all I am. It feels like that sometimes -I’m on the defensive, alert – fighting or flying (turns out I’m also a serial avoider…); it’s what takes up my energy – what will I do with it if I accept myself and all my failings?

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Unseen, by Robb North (CC BY 2.0)

In order re-direct the energy formerly used for inner battles, I need to make my differences/defects/failings into something positive, like the heroine of a young adult novel.  I’ve decided to try to do this by writing (so, here we are!) and walking (which I will write more about another time). I don’t know whether this will work or not, but things can’t go on as they are, so it’s worth a try.

 

Things I talk about when I talk about anger

I am an angry person.

My anger is like a volcano: there are a lot of things I’m angry about and they are mainly under the surface, but sometimes something triggers off the volcano and it explodes, often disproportionately to what the trigger actually was, because I’m not really angry about the triggers, I’m angry about other, bigger, things (hence the over reaction). I have decided this has got to stop, because it is anti-social, inappropriate and could lead to injury to people or things. Also, I am just fed up with being angry, and with feeling bad (or even angry!) about about being angry.

I went to see a counsellor last week. She said it’s OK to be angry about bad things that have happened or good things that have been taken away that (it turns out) I’m grieving for. I said OK, but how can I deal with the anger without being like a volcano? She said, I think you need to feel like your anger has been heard, so how could you make that happen? Writing? I suggested. How about talking about it? she said. How about both?

OK.