My heart

I mentioned in my previous post that my heart was being rather high-maintenance, which was probably something of an understatement. Last week I spent five days in hospital, getting a whole load of tests done, because I’ve been very slowly feeling a little more tired and a little more breathless, and recent scans and blood tests have been showing some changes. I was diagnosed with heart failure ten years ago and transplant has been mentioned as a future possibility from day one. I was viewing these tests as the beginning of the journey towards that stage – getting a baseline so I could be monitored more closely over the coming months and years. Well, it didn’t work out that way and on Friday I was offered a place on the routine transplant list and advised (strongly) to accept. I haven’t signed the consent forms yet but that will be happening very soon and once I’ve done that…that’s it, it could happen any time.

The last few days have been pretty tough (again, something of an understatement) and I’m not sure exactly what to do with this or how to carry on with my work. I don’t want to be reading or thinking about hearts (I was in the process of writing something about a protagonist who dies on the operating table during heart surgery and suddenly that book’s lost all appeal!) and I’m not exactly capable of writing or thinking about much of anything. My brain has been oscillating between sad mode and panic mode, neither of which are conducive to academic work.

I’m also just feeling a bit like I’ve had the rug pulled out from under me in terms of who I am and how I can relate myself to this project. I’ve been hellbent on representing outcomes other than transplant (transplant gets more than enough attention in the art world if you ask me) and all of a sudden my own story is a transplant story. Weirdly, talking to the surgeon on Friday, one of the things that upset me most was when he told me he’d remove my CRT-D at the same time as my heart and I had a big cry when I came home and saw my barnacles embroidery and my cyborg bracelet. I suddenly felt excluded from my own club. Of course, there’s a fair chance a new heart might need a pacemaker, so maybe I’ll be back in the cyborg club before long, but…it just doesn’t feel the same.

I’m determined that I will carry on with this work soon, I just don’t know exactly how soon…or exactly how. Things might get a little quiet around here for a while, or I might start posting even more than usual, I really don’t know, but it feels right to share this news at this early stage and just lay the messiness out there. I’ll do something with it somehow.

In the meantime, pictured is my initial artistic response to the heart transplant news – an idea that popped into my mind quite unbidden just moments after the consultant broke the news. Sorry if you find it gross. Yes, that is my hair and my blood. It felt really important to me to make this before anything else happened; to make it from my own body while I still have my own heart in my chest. I think it’s because I finished making this today that I feel able to put the news out there. This was step one.