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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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:

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 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.

In dreams

I had a particularly odd dream last night. I dreamt that I was in the cast of Heroes and I was in a scene with Matt Parkman where we were running through the streets of somewhere Roman, from what I could tell. Matt didn’t have the required pass to get through to the next section of the city so the guards took him away. I had the proper pass so I ran on and as I ran I could hear Matt being beaten up by the guards. I got back to the house (no idea where this was) and I was myself (as opposed to my character), but the scene from Heroes was actually real life and I found myself talking to Claire Bennet, saying that we had to go and rescue Matt.

I was thinking about dreams in relation to “voices” and I realised that I can never remember what people sound like in a dream. I can remember other sounds (such as the sound of Matt being beaten up in last night’s dream), but not the way people’s voices sound. Even in real life, there are some people’s voices that I find it really difficult to recall to memory and hear in my head. Certain people’s voices come to mind easily, but there are some that I just can’t remember even if I know the person really well and talk to them a lot. I wonder whether it’s because some people’s voices are more distinctive and therefore more memorable than others. I suppose so.

In relation to dream-like states and voices, I had quite a strange experience when I was in hospital (I must stop using that phrase) and had taken quite a large amount of codeine to help with the post-operative pain before I went to bed. When I got into bed and shut my eyes to try and go to sleep I started to have conversations with people (various different people, some I recognised, some I didn’t) who I thought were standing at the foot of my bed, talking to me. However, when I opened my eyes there was noone there. Every time I closed my eyes I thought there was someone there and talked to them, only very briefly, because part of me knew they weren’t really there and made me open my eyes again and wake up. In the end, it got so annoying and also quite disturbing that I didn’t want to shut my eyes anymore so I gave up on trying to go to sleep! It was most strange, and not an experience I would like to repeat.