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
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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.

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.

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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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!