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Documenting not dying since October 2013.

On how Halloween made me who I am.

31st October, 2008. I spiked a temperature, so we adhered to protocol and went to A&E. I was admitted to a cubicle in HDU on Ward 15 for what I thought would be a weekend of IV antibiotics, but turned into seven months of gastric destruction and liver failure, liver transplant, unprecedented accidental stem cell transplant, and rehabilitation. It's funny that a night on which people dress up as somebody else, I would start a journey that resulted in an entirely new identity.When I had cancer, I was certainly sick and weak, but never as lifeless and limp as when I was in liver failure, and in recovery from it. Being a still fairly independent young woman, regressing to an almost childlike-level of dependency on those caring for me plunged me into an identity crisis. One's identity is so tied to the physical self, at least in adolescence, I think, having that completely stripped away and changed put me in turmoil. I went from eight and a half stone at admission to just over five at my sickest. My stomach's lining had been destroyed by GvHD and I had none of the enzymes needed to digest anything, so gastric nourishment was nigh on impossible, leaving me with only intravenous feeds as an option. It was so drastic, and my brain was so mixed up on morphine and ketamine, I couldn't process my new exterior. I also had no muscle mass, having to learn just to stand and walk again. So much of who I think I am is connected to the image I project to the world, how I am perceived, that such changes to my body have had a massive impact on how I feel about myself. Even how I mobilise affects how I behave - if I can walk, I feel confident and happy and strong because you would never guess from my outward appearance that internally I am broken, but when I'm in the chair, I feel diminished, invisible, and much more like I have to put on a brave face to show that I am not my disability, I am just like you, I just don't have the energy to walk right now. At the moment I'm weakened, on steroids and a million miles from where I want to be. I'd hate to appear in the media right now because I wouldn't want the image that represents me to look this way, even though I know that rationally, it is not how I look that will be what is remembered, but what I have done and the words I have said. What remains of me will be in the memories of my loved ones, recreated whenever they bring me to mind. How I am remembered is determined by who I choose to be, and when I feel let down by my physical self, I must fight the urge to hate myself, and instead put that energy into banging my drum.

The 29th & 30th; I'm having less coughing fits that leave me feeling like I'm going to die, so that's always good.

The 29th & 30th; I'm having less coughing fits that leave me feeling like I'm going to die, so that's always good.

The 27th & 28th; She was so tiny but brought so much light.