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:

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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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“…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.

 

MOT report

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Art by Martha Hall, Beany House of Art & Knowledge, Canterbury. 22nd June 2016

Basically, my heart is about the same as it was last year, apart from the changes in its electrics, which is good. Although the heart muscle function is impaired, the impairment hasn’t got any worse since last year – the echo pictures look basically the same. I’m currently feeling less tired than I was the last time I had my MOT, which is also good, but we don’t really know whether this is due to reducing the dosage of beta-blockers, having a day ‘off’ a week or improved diet. So, the plan is to carry on as we are and then re-test everything as usual next year.

She asked me if I had any questions, so I asked about my long term prospects. These are OK at the moment. I will probably need my valve replacing at some point in the next few years, but we hope this can be done percutaneously (this is not a word, according to WordPress spellcheck!) rather than by open heart surgery. I might never have to have open heart surgery again! One can only hope. Also, if my heart muscle function gets worse they will add in some medication and will probably change my pacemaker to more modern one (bi-ventricular?). I will probably start feeling palpitations more and more as I get older, but these can be treated with meds and/or ablation.

As you can see, there are a quite a few ‘probablys’. It’s hard to predict what will happen – my heart could remain stable at this level of (dys)function (actually not too bad, considering) forever or it could get worse, in which case see above. If it ever gets really bad, things like transplant and mechanical hearts are an option, but my cardiologist doesn’t think it will ever get to that stage. Let us hope not.

So, for now, the news is good. Onwards…

You say ‘mind blowing’, I say ‘weird’

I went went for my pacing check last Monday. All was well. In fact, my heart is actually working better than it was before. For some reason (unknown), the node that wasn’t working, which meant that the lower ventricle of my heart was being paced all the time as I had complete heart block, is now working quite well. The technician has now changed the algorithm so that my heart will work on its own as much as possible, but the pacemaker will still stop my heart rate less than 60 bpm. The technician this change in the node’s behaviour was “mind blowing”. I said it was weird. But, either way, it is good.

Image: Atlas Pacemaker by Travis Godspeed via Flickr

Somerville Foundation Conference 2016

Mr C and I went to the Somerville Foundation‘s annual conference on Saturday. As I may have said before, Mr C refers to this event as me being with my own kind, which is true. The powers that be are thinking of stopping the conference, which would be such a shame. I can see where they’re coming from – the Foundation’s funds are diminishing rapidly and I expect the conference is one of their biggest outgoings – but for us, the people with CHDs, not having the conference anymore would be a big loss.

It’s not just the fact that it’s an informative and interesting event, but it really comes back to Mr C’s joke about being with my kind. Yes, we are with ‘our kind’: people who have been tested, prodded, invaded, cut open, had our rib cages sawn in half, been injected, sedated, medicated, treated, mended (for now). Someone once told me that having open heart surgery has a similar effect on the body to a bad car accident – and here we all are,  in this room in a fancy hotel in Leicester, walking around, laughing, eating, thinking, discovering. Living. I think we need this, we need to be together and to not feel like the minority, the different ones, for a change. I think we deserve this company of our fellow survivors and the opportunity to share our stories and be properly understood.

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A badly lit picture of lots of people with congenital heart defects (and Mr C) having lunch

Anyhow, as usual, it was lovely to see everyone (well, nearly everyone, some people couldn’t be at the conference this year, which was a shame. (Hi Jo!)). I think my favourite talk was the one about developments in non (well, less)-invasive surgery – carrying out surgery using cardiac catheterisation  We’d heard about it at conferences before, but this was the first time we actually got to see and handle some of the devices that are used. I took some pictures:

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A cow’s heart valve. This folds down and is passed via catheter into the heart to replace a damaged valve. I have a replacement valve but mine is a pig’s valve.
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This device folds down (a bit like an umbrella, but much more intricately), and is passed into the heart via a catheter. Once it’s in place it is opened out and used to ‘plug’ a septal defect (where there’s a hole between two of the heart’s chambers – ‘hole in the heart’) – one of the defects I was born with.

I also appreciated the talk from Anne Crump (the SF’s Mental Heath Support Worker) about dealing with anxiety relating to having a heart condition. Again, we’ve heard Anne talk about this before, and I was expecting it to be a bit samey, but actually, I realised I needed to be reminded that it’s OK to be anxious about stuff. In a way, it would be more odd if we weren’t sometimes worried about our heart conditions! Recently, there has been more research about the psychological effects of growing up with congenital heart disease, even post-traumatic stress disorder, which seems quite extreme, but actually isn’t that unlikely, given what some people who’ve had multiple surgeries and other invasive medical procedures have been through. Sometimes I think we just need to give ourselves a break!

Another highlight was Kate’s talk about her bike ride from one end of Ireland to the other. An amazing example of hard work, determination and perseverance; Kate was raising money for the Somerville Foundation. Her blog is well worth a read.

If there isn’t a conference next year I hope we can all find another way to meet, but I’m not sure that this is very likely, given logistics and people’s commitments etc. I think sometimes it take an organised event to get people together, and I’m not sure we can rely on people to take it upon themselves to set up meetings,  but perhaps I’m just being pessimistic! Anyway, we shall see.