Living Well is the Best Revenge

There is a song by Marianne Faithfull called “I feel guilt” and it could be my theme tune. Bloody hell, it’s not as if I’m even Catholic!
But I feel guilt so much of the time, mainly that I'm not doing enough for Nick. I suppose underlying that is the fact that it's him who's ill, not me. As his sister I should be pulling out all the stops to do whatever I can to make the rest of his life as comfortable and easy as is realistically possible. 

Survivors’ guilt is actually a recognised phenomenon among family members who turn out not to have drawn the short straw for Huntington’s. Screwy, isn't it. You'd think we'd all be ecstatic for the rest of our lives.
But survivors may have been the last man standing in an HD family, watching their closest relatives change unrecognisably, suffer and eventually die, knowing that the cycle will inevitably repeat. 
Many experience the same kind of post-traumatic reactions as those who have actually been through a catastrophic event. 

In a sibling relationship it's very hard to untangle your feelings, especially if there are just two of you and you were always close. Knowing that one of you is going to take that roulette bullet. 
Inexpressible relief if the pistol clicks and it's not you. Inexpressible guilt if it isn't - because if it's not you, it's going to be them.
What the hell to do with that? It's primal - at all costs, wanting to live. But then unbearable to see someone you love suffer so miserably, especially knowing that the only reason it's not you is pure chance. 
Expressing guilt is the only way you can take control in an impossible situation. 

You might say, it's the same for any of us - we can lose someone just like that to road accidents, dementia, pestilence, cancer - and wonder why it happened to them and not us. 
But then factor in the lineage of HD and the nightmare quality of replaying the same family horror movie again and again and again over generations, and an extra darkness starts to descend. 
There is nothing, nothing you can do about this except try to make things better for the sufferer - and that's where the guilt starts to take hold. Because you're only human. 

So, yes I escaped and I am so lucky but there is no Get Out of Jail Free card here. The price I pay is this consuming, on-and-ongoing gnawing sense that I ought to be doing more, and it just keeps getting worse. The only thing that eases it a little bit is actually being with Nick and spending time with him, just kind of sharing the load in whatever way I can. For what that’s worth. But however much time I spend just being there, doing his laundry or cooking his dinners or taking him out to the cinema or the pub or the hospital appointments it doesn’t feel enough. 
I suppose that, having let him take the bullet then, I am doing everything in my power to make amends by becoming his carer now - but it’s not enough. Nothing I do will ever be enough.

Years ago, before Nick and Nikki got married and they were living in a little house in Gateshead, I went to visit and spent a horrible evening watching a movie with them and trying to hide the fact that my legs had gone weirdly disobedient – kind of numb like pins and needles but twitching helplessly beyond my control. It seemed to go on for hours. We were all a bit drunk but I was desperate to hide it, desperate that they shouldn’t notice because I knew what Nick would think – that this was the start of it all, the unmistakeable signs of the onset of HD.

But it wasn’t, was it? I could put myself in his shoes til I’m blue in the face but I can’t be him. I don’t know what it’s like to be in that body every hour of the day and night with legs kicking out of their own accord, arms just AWOL, never ever comfortable in one spot for more than a few minutes. So he needs me to be healthy and strong and in one piece, to be his arms and legs and brain, his PA and bank manager and taxi service.  
Most importantly he needs to be able to count on me and for me not to turn into a complete nutjob.

So I struggle with the awful guilt but I see that I have to try to have a good life myself too for all our sakes, otherwise what is the point of carrying on? And remember another documented aspect of surviving that roulette bullet, which is Post Traumatic Growth - a new zest and appreciation for life in all its small glories. Deeper connections and relationships. Recovering a sense of humour. Just being glad to be alive here and now and seeing what the day brings. 
Well. Stick a pot of coffee on. I'll drink to that.