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.