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

Illness and disability in Elinor M. Brent-Dyer’s Chalet School stories

The abstract for a paper I wrote for the International Centre for Victorian Women Writers: Fifth International Conference: 1920s and 1930s

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.

You can see the presentation and my (possibly incomprehensible) notes on the university’s repository.

Please don’t call me a hero

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 some pictures taken holding the photo of myself, and I don’t know whether it was because it was a picture of me as a little girl and that somehow reminded me of holding B, but I felt very protective of my younger self, and quite sad and angry about the things that happened to her. I don’t know which picture has been chosen for the exhibition, but it will be interesting to see how it all turns out.

But this post isn’t really about having my photo taken, although it is related to that event. The Somerville Foundation have been tweeting about the Scarred for Life exhibition, which is obviously fine, but the tweets have contained words like ‘heroes’ and ‘brave’, e.g.:

Perhaps the man in this picture is a hero (I don’t know him), but I’m not, and it makes me really uncomfortable when people use such words to describe people with heart defects, or any other type of long-term health condition/illness/disability. Yes, we have gone through a lot of bad stuff, and yes, a lot of this stuff happened when we were children (which seems to somehow make it worse in other people’s eyes), but most children and probably all adults go through horrible things at some point. True, they may not be such ‘dramatic’ things as open heart surgery and I believe (know) that experiencing trauma and separation from parents/carers as a child does have a long-lasting effect on a person, so I’m not trying to downplay the possible magnitude of having a congenital heart defect (CHD). It’s just that the last thing I am is a hero, and I don’t think I’ve ever been brave in my life.

It’s like there’s an automatic chain of thought that people (I’m generalising) have when it comes to labelling people with CHDs – horrible things have happened to you but you’re still alive therefore you must be a ‘hero’, you must be a ‘fighter’. But I haven’t ‘fought’ to be alive; all I’ve done is survive having a heart defect and the various interventions that have been undertaken to keep me alive and help me stay relatively healthy. If there are any heroes in this story it is those who have invented things, done the surgery, pioneered treatments, been the guinea pigs (not literally), worked and worked, taken risks, experimented on themselves, expended all their time and energy to find ways to keep people like me alive, cared. Nurses, doctors, researchers, scientists, surgeons. People who clean up our blood and vomit day in day out, people who stay up all night to watch us and make sure we don’t fade away. But I expect these people would say they’re just doing their jobs.

I have suffered, and I have survived, but that doesn’t make me a hero or a fighter, it just makes me human.

Open Hearts

The Grown Up Congenital Heart Patients Association  has just published a little book of stories from people with congenital heart defects, called Open Hearts. If anyone has followed me to WordPress from my old blog you might be able to remember me talking about trying to write my story for this book. I eventually finished it and it’s in the book. It’s weird reading it again now, as it was written over two years ago, long before I even knew that I was going to have my recent operation. When I looked back at my blog entry about the story I saw that I’d written that “I don’t often talk about my heart”, which is not really true at all now – sometimes it feels like it’s all I’ve been talking about for the past few months, both on this blog and in real life!

I bought myself a copy of Open Hearts and read through a few of the stories last night. I cried so much I had to stop reading. (I also didn’t used to talk about my emotions very much, or indeed be so emotional – what has happened to me?) I think I was expecting all the stories to have happy endings and, of course, some of them didn’t. Even if they had happy endings the struggles and sufferings of my fellow people with congenital heart defects (I don’t like the term GUCH) were all too present throughout the stories.

Some of my tears came from sympathy, some from empathy and some, I think, from relief in the knowledge that other people feel the same as me.

Reading some of the stories made me face up to the fact that having a heart defect, even one that’s just been nicely re-repaired, is a serious and potentially life-threatening thing. Although I (obviously) do realise this – I’m not that stupid – I tend to live in hope that everything will be alright in the end, that I’m going to get the long lifetime I wish for and be able to do most of the things I want to do in my life, but this just isn’t the case for many people with congenital heart defects.  It may not always be the case for me. Perhaps some of my tears came from me recognising this. I’m quite good at self-pity, I’m afraid. 

Reading the book reminded me again that I take a lot of things for granted, when I should see everything as being precious. I wish this wasn’t easier said than done.

The story of my heart

Is that a song title? It might be. Anyway, I still haven’t even started writing my GUCH story, and only 33 (? maths isn’t my strong point)days until the deadline. Actually, that is quite a while, maybe that’s why I haven’t started yet – not enough pressure. I am a bit appalled, though, that I can’t think of anything to write about what has been a major part of and had a major effect on my life. It might be more a case of just not knowing what to pick out (see previous post on this subject). See I am procrastinating instead of getting on with it. Maybe if I wait until 29th July to start I will be more successful?

Or maybe the truth is that I don’t actually know what to say because I don’t know enough about it. I have always felt under informed, if that’s the word, about my own medical history. I think this is because I was quite a small child when all the major things were happening, and I don’t actually remember anything much about those early years. I think I might have subconsciously blocked out memories, because I seem to be able to remember a lot less about my childhood than other people can – or maybe I just know people with good memories! The things I vaguely remember (or think I do) are:

1. Being baptised in hospital, although it is apparently impossible for me to remember this as I was only a few days old at the time.’
2. Eating ice cream with a friend on the ward aged three?
3. My fourth birthday. Just after I left hospital after my operation I think. The nurses gave me a large cuddly mouse wearing a pinafore dress and mob cap, which I still have. She is called ‘wobbly mole’ even though she’s not a mole, but she is quite wobbly.
4. Having a catheter put in and looking at my insides on a monitor.

Another reason I think my subconscious has been at work is my (sometimes quite extreme) reactions to any sort of even vaguely invasive procedure. Going to the dentist can be very embarrassing as I have a tendency to cry. I have found that humming helps, although I worry the dentist then thinks I’m insane. Having a blood test used to be the same, but I am now not so bad if I don’t look at the needle. Having my ears examined at my regular check-ups (I had gromits – no not the dog) was a particularly dreaded activity. The doctor reminded me of Jerry Adams, but this wasn’t why I hated going – I could not stand him poking his little sticks in my ears and I made sure he knew this! I felt sorry for the nurse, but not really for him. I cried, I whimpered, I tried to escape. This would not have been so bad if I had been aged three, but I was about 16-17 at the time. Thankfully I don’t have to go there anymore.

Bizarrely, actually going to my heart check-up is the least stressful medical thing I have to do nowadays – maybe because I’ve done it so often. It takes a while because I have to have several tests – ECG, ultrasound and sometimes x-ray (used to be x-ray every time) and is very boring for the person who comes with me (if anyone does) as it involves a lot of waiting around. I have had to have an MRI scan which I have written about previously [summary, I panicked, got claustrophobic (not necessarily in that order!) and had to be let out. I never want to have one of those again]. I then had a CT scan, which was better even though it involved needles…ok, just one, but that was enough. You can also read about this in a previous post, if you would like to, but it’s probably not very interesting! Before the MRI they attempted an endoscopy, but this was not a success as I reacted like I reacted to the Ear Man, but worse (aged 25).

Needless to say, I feel very silly when I react badly to members of the medical profession who are only trying to help me, but I just can’t help the way I react. (Hence my idea that it’s subconscious reaction to previous experience of medical procedures).

Usually with the check up I know what’s coming, basically at least. More recently though, there has been talk of mending my leaking valve (again – the one I have now is a replacement) and I have a new consultant, as the beloved Rosemary Radley Smith has retired. She gave me some of her blood once! So, I may once again be heading into the unknown. RRS, as she is known (to me, at least), said I should have the valve repaired before I start having children (if I ever do), and although I don’t know if we will, or even can, have children, I would like to have the valve sorted out – it would be one less thing to worry about. Well, I will see what the new person says in August.

I don’t often talk about my heart. For one, as I said earlier, I don’t really know what to say. For two (oops) I don’t want people to think I’m making a fuss and implying they should feel sorry for me. Having said that, I confess there is a part of me that wants people to recognise that I have been through these things, and that I’m not being a wimp when I can’t run to the train station or keep up with people going up hill, and that I’m not being completely unreasonable when I cry at the dentist’s.

[Feel free to disagree!]