One of the most interesting things about making notes during my illness was the lack of correlation between my memory and my notes. It wasn’t that there was any factual difference, it was more of a personality difference.
Let me explain that.
As I was reading the notes about my experience – before, during and after my hospital stay – I realised that while the facts of my case remained the same, I have a completely different attitude towards them now.
It’s like reading about a different personality from way back when.
Several people have told me about the phenomenon of patients being unable to lay down long-term memories of pain – the part of the brain known as the amygdala is responsible for that – and it seems that it just fails to record the exact details of pain so that a person can get on with their life. (I mean, who needs to be able to recall in vivid detail the nastiness of illness and re-live it every day?)
Yet, the mental experience of going through such an illness is very different from the mental experience afterwards. It is my opinion, and based solely on my own experience, that you could ask the same person about their illness/surgery at different times and get completely different answers.
Because it means different things to them at different times.
I was reading yesterday about the experience of a journalist I know slightly – Peter Carvosso – who was diagnosed recently with Motor Neuron Disease. You can read about his experiences here, but what struck me was the similarity between his experience and mine.
He put off the going to his doctor, as all men do. But finally when he went, his big fear was that he had cancer and all that that entails. Eventually, after quite some time, he was diagnosed as having MND.
Now, one of the things that stopped me in my tracks after I became ill was how people put me and my illness in a category. They would say “X had that” as if my experience equated to X’s. This became annoying after a while. If I said something like “I was in pain”, the conversation invariably led to levels of pain, almost like it was a competition.
Was my pain more or less than having a baby? Was it more or less than someone else who had a gall bladder problem? It seems to be the default conversation for people, which is fine, but it bothered me.
I suppose it’s the idea that we all want to be treated and thought of individuals first, and patients second. A famous Irish journalist, Colm Murray, died recently from Motor Neurone Disease. Whether he likes it or not, Peter Carvosso will be forever be associated with Colm Murray, simply because they are both journalists who have had MND.
I am also reading a lot in the newspapers these days about people’s experience in A&E. I wrote about it myself in a piece that was published The Sunday Independent a few weeks ago and since then, I’ve read a lot about other people’s experiences in Emergency Rooms.
And it’s a very strange feeling. Is one experience worse than another? Who wins the prize of ‘worst experience ever’?
I didn’t have a bad experience, particularly. But I found that once I had read one piece about Emergency Rooms, I’d read enough. A&E’s aren’t my daily preoccupation – I don’t spend time there ever day, normally. So once I’ve got the basic gist of what goes on there, mentally I move on to what can be done to solve the problem, if, indeed, it can be solved.
But still, the competition in the media is to find the ultimate crowded A&E, the all-time greatest crowded hallway of trolleys. It’s a competition which doesn’t matter the slightest to the patient concerned. If fact, they don’t care if they’re the most-deserving or least-deserving patient, the one in the greatest or the least pain. All a patient cares about is that they get the care they need and continue to be treated like an individual rather than a statistic.
But I’m only talking this way because I no longer have an illness to concern me, or to be more honest, a pain to concern me. And that’s the crux of the issue. Illness and thoughts of illness are confined to the ill. We move on after that. And that’s one of the reasons why health is so difficult to manage.
Most people will not think about their health all the time. There are two states to be in – either you or someone close to you is dealing with the health system, or you’re not. If you are, then everything about it is important, if you’re not, then it’s just another boring thing for which you don’t have the time.
I vaguely remember it now. Like Christy Moore in the song quoted at the start of this piece, I remember the dread. But in this moment, it’s somehow unreal to me. Illness, loss, pain, death – all those things are now ethereal and intangible. It’s the stuff for dreams and wanderings that happen when the mind is only half-awake.
I suppose that’s a good thing. It means I’m healthy and back to living a normal life. But when you have an experience like this, it always remains there in the background. You can’t unlearn it. So maybe a part of you always stays concerned about your health, a part of you knows and understands that nothing, least of all your own existence, is forever.
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