I’m a very disciplined woman when i want to be. I see a goal I want and I go for it, that’s always been a stable part of my personality(?) or maybe a stable part of my mind. I always love investigating how my health issues in my 20s have effected the way I am and how I move through the world. Partially for my own gain but also because pauses, weird trajectories and life getting in the way is the thing that creates a person.

Now I am developing habits, structured ways of working, things I want to come back to again and again, I’m seeing struggles in feeling comfortable with the predicition. An apprehension is always there about things falling apart, an anxiety I can’t seem to rid myself, and one many can’t seem to understand. In my mind, somewhere, there is a 21 year old girl telling me to prepare to have to give everything up, to feel like I’ve wasted time, to be abandoned by the quiet rhythm of life.

A storm, to her, is always coming. In the form of hospital stays and no energy. There are doctors in my head telling me off for working, for trying, for pushing. There are people around me telling me to lie down, to stop, that my ambition is the thing that makes me sick. I begin to feel happy, excitable and proud of the progress I’ve made and the 21 year old girl looks at me with a patronising distrust. She knows better than me, that this routine, this motivation, this work will all fall apart soon, don’t get too comfortable.

Trusting that my 33 year old self knows better than the 21 year old self is how I push through that feeling. A detachment from outcomes, a sweet acknowledgement that although people tried to find a ‘reason’ for my sickness, my ambition or passions were not the cause. My happiness and intrigue in things beyond myself are not the reason my body likes to break down and attack itself. Sitting with the idea that there is no reason, that life doesn’t bless us with concrete reasons, is hard when those you love want that to be the case. I am not walking into a dangerous cave by wanting to enjoy the life I have.

I recognise now that alot of ‘don’t worry about work’ and ‘don’t do anything’ came from men. Men who didn’t see why I would need to work. Men who were from a generation and wealth bracket that made me trying to create and express myself when I could just be resting, look like un necessary stress, not a vivacious need to find the truth of myself and the world around me.

I was chastised for living because they always found me dying.