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.
Many experience the same kind of post-traumatic reactions as those who have actually been through a catastrophic event.
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.
Expressing guilt is the only way you can take control in an impossible situation.
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 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.