Talk about morbid…ok let’s do it. Who wants to read about death and myasthenia? Well I do – except that I can hardly find anything on it. Even the people at Myaware were not sure about statistics when it comes to death. You would think on holiday that it’s the last thing I would be thinking about, but because I can’t find the relevant information the thoughts creep up on me in the most unexpected locations (like a beautiful bright day in San Sebastián).
I’m a realist when it comes to death. We all have to go at some point and I know that due to my myasthenia it may well be that I die younger than others. Many people avoid talking about it, because they think not uttering a word about death keeps it at a safe distance. But, for me, it’s important to be regularly reminded that life is finite so that I remember how precious time is. I was delighted recently when I saw they are hosting death cafe nights in London and around Europe where you can go to discuss the ‘finer details’ of mort and your arrangements.
When my symptoms are bad, my love for life and the reminder that everything must end keeps me going. But I still haven’t found any research about death and myasthenia. I want to be more equipped for the possibilities. Call me morose but it’s a way of coping and giving myself the best chance of gaining extra time.
I also want to be prepared for what happens if my medication stops working and/or if my side effects get closer to the fatal possibilities,
A few months ago I saw a brilliant play called Happy Endings. It centres around a female chemo ward where a new patient arrives with stage 3 breast cancer. She hears the stories of the other patients, begins the preparations for treatment but decides that the remainder of her life really is too short to be spent in a stale ward. She heard the choices and went her own way, which the doctors would not accept initially.
Due to the lack of available research and statistical information, perhaps the best option for me is to have the discussion with my consultant when I see him in a few months time. As someone who rarely minces their words, I will need to be prepared for what he has to say. If you have found any interesting research on this topic please feel free to share it.