Not written for a while but I had an interesting discussion with my psychologist today.
It was about luck/chance of bad things happening and where you place the blame and anger.
There is around an estimated 0.05% chance of having a genetic mutation of Long QT. That’s 1 in 2000. Now I don’t know 2000 people, far from it, but in my life I’d never even heard of Long QT. So why did this happen to us, to Isla? I mean there’s no one really to be angry at in this instance. It’s shit luck. Can blame the world, the deity of your choice, bad karma: ‘is it because I lied when I was 17?’; The whole it’s not fair, we didn’t deserve this. Now, I can rationalise… some people have it far worse than us and have been through more than us, but it’s all relative. None of my pre-cardiac world friends have ever had anything like this happen to them. We’re the one of the 200 or so people I know.
Part of my therapy is working on my compassionate voice. The knowledgeable, rational, wise voice that can talk me down. It doesn’t tell you everything will be ok, because it’s too clever for that. It knows it might not be. The compassionate voice sometimes tells you that bad things happen, and it’s not fair, and it’s sad, and it’s ok to be sad sometimes.
So today we were talking about Isla, how she’s doing, and what that means to me. At the moment, things are going well and everything is positive. It’s not something I take for granted because I know it could change tomorrow. Chances are everything will be fine. However, tomorrow isn’t guaranteed… for any of us… but less so for Isla.
My psychologist asked me how I feel about my compassionate voice suggesting that all will be well given that Luke has said things look good and she’s been so stable… I said I’d punch Yoda in the face.
(If you haven’t read any of my stuff before, Yoda is my compassionate voice since he is very wise, logical… and his funny speech makes me laugh when I channel his advice. Plus if you feel insane talking to the voices in your head, you might as well add some chuckles in there and scare everyone around you). I’m sure my admission for violence was well noted in my file too. Why would I punch him? For being too rational and sensible. I know that thanks Yoda, but if something bad happens it is your fault. You didn’t say it would be ok, but you said chances are it will be. Percentage wise, Isla will be fine, but I think if I believe the rational voice and something goes wrong I won’t ever be able to trust it again.
My analogy for this was the weather. If the weather forecast says, say 10% chance of rain, you hang your washing out based on that. 90% chance it’ll be sunny and dry.
So if you hang your washing out and it gets soaked, what do you do? Blame it on the weatherman (or woman, but I’m going with B*witched here). Is it really their fault? Well that depends on your interpretation. They didn’t say it definitely won’t rain, they said there’s a slight chance, but you, as an average Joe, trust their skills at reading weather patterns and if there’s only a slight chance of a shower, you believe that the sun will shine. Owain isn’t responsible for the clouds, he hasn’t actually made it rain, but we can blame him nonetheless.
My lovely psychologist (she is genuinely lovely) then put this in terms of surgery. When Isla has her next procedure (ICD change) there are risks. Of course there are, any time anaesthesia is involved there’s risk, for anyone. Throw in to that the complexity of Isla’s and her condition… Let’s say that there’s 50% chance her arrhythmias will cause problems, 40% the complexity of the surgery itself, which leaves 10% human error. If something goes wrong, where does the blame lie? In my heart of hearts I know that any surgeon would do the absolute best they could. Isla is very difficult to operate on anyway, even her ICD surgery took twice as long as her scar tissue meant it had to change to open chest, and her Long QT and being extra prone to arrhythmias means she’s extra tricky. So I know that realistically everyone would do the best they could and ultimately it could just come down to the fact that Isla is just so brittle. Does that mean that you don’t think, ‘if another surgeon had done it, things wouldn’t have gone so wrong!’? When you hand your child over to the surgical team, it’s gut wrenching. You’re giving them the most precious thing in your world and trusting them to keep them safe. Of course it’s not likely to be their fault though if something goes wrong, your child isn’t in their care because they’re fit and well. They are there because they need surgery. I think it’s natural to want someone to blame though. Something or someone to aim some anger at, at least initially. It might not be right but it’s a defence mechanism. Because deep down it’s the nature of the beast and Isla’s condition can just be brutal. Chances are there’s nothing any surgeon or doctor anywhere could have done differently.
During the surgery, my Yoda voice will be telling me that Isla’s had this procedure done before when she’s been in a much worse state and she was fine. She got through her pacemaker surgery when she was odds on not to make it. She made it through the ICD surgery when she was so small and still very prone to cardiac events. She has had countless shocks and been ok. Her meds are keeping her safe. The surgeons have done this hundreds of times. She’s at a world class hospital with the best of the best working on her.
Yoda tells me all this to reassure me. And I know it’s all true. It’s exactly what I say to other people. But it doesn’t stop the niggles of doubt. Yoda knows that it might not be ok. And you know what, if it’s not, it’s Yoda’s fault. When things are beyond our control, and there seems no reason for it, it’s too hard to aim your anger at nothing. And bottom line I think I’d just end up blaming myself. Blaming myself for believing it could all be ok.
Problem is, you can’t go through life holding that negative attitude, it eats you up, you have to be positive and believe everything is going to be ok… even if you know there’s a good chance that it won’t be.
My psychologist asked me if I see things very black and white. I do. Things are often very simple for me. You can be right or wrong. Maybe this is a relatively new thing and it’s come from diminishing tolerance for people due to my experiences recently in life. Maybe I’ve always been like this. Although it did occur to me, that only The Sith deal in absolutes… so maybe having Yoda and wanting to punch Yoda and his sensible words in the face are down to me not being a Jedi, but being on the opposite side of The Force. Maybe I’ve succumbed to the Dark Side or done an Anakin and morphed into Vader.
I’d argue the change in me (as with Anakin), is circumstantial, events have led me to become who I am and how I think. That 0.05% chance my baby would develop a genetic mutation. A sliding doors moment in my life where things may have gone so differently. Sheer shit luck with no one to blame… except maybe the weatherman.
The Long Cutie 