Written Tuesday 28th April 2015 – 1pm
We have just had a fire drill at school, and in the last 20 minutes I have realised the full implications of being the new me. I have a disability. I am disabled. I am dis-enabled. There are things I cannot do and walking downstairs and across the school grounds (without a burning pain and sensation of lead in my legs) is one of them.
And it’s shitty. And it makes me feel really, really bloody angry. Just one of those things that I have to realise I cannot always do. Like running a department. And the worst part of this horrible disease, is that it is making me hate people – all those carefree, oblivious people who CAN do these things. Those bastards that can just walk, and think straight, and remember stuff, and go downstairs for a fire drill, then back upstairs and then downstairs for their lunch only minutes later, as if it is the easiest thing in the world. Because to them, it is. They don’t have to take a deep breath and pause on their way to decide if it is worth sacrificing doing something else (something equally trivial and seemingly simple) later, something that would have to remain left undone because the energy needed to do it is already used up – wasted!
I HATE these trade-offs, these decisions that I keep having to make, this constant bargaining between either doing one thing or doing another. I want to not have to choose – between picking up my own lunch or having the energy to eat it; between doing the job that I loved, that added to my sense of my life’s purpose, and having the energy left to actually LIVE the purposeful life.
And I just cannot forgive those people who don’t have to choose, who can do all those things. Because it’s really just not fair. Because I could have been…what? Well, now I will never know.
Yes, I totally do get the whole consolation I have been telling myself – that as one door closes another one opens, and I know that I have to try to turn this into a positive, and make the best of what I have, and all that other shit, but for now, just for now, I want to wallow, and curse, and be angry.
Because walking – hobbling, fucking LIMPING – along in front of 1000 people is humiliating, and it’s hard and I hate it. I really hate it. So when my friend offered 5 minutes ago to collect my lunch for me because “it’ll be quicker”, I burst into tears and sat down to write this. I KNOW I am slow. On any other day, at any other time, such a statement of fact would have simply washed over me. “No offence” – “None taken; it’s true; you’re right”. But in that one moment, in my raw, self-conscious, angry state, it hurt. It was too true, too close to the hurtful self-talk that I was already hearing, subjecting myself to, trying to drown out.
So for now, for a while, I am just going to sit here, with the pain of the realisation – for perhaps the most profound time since my diagnosis – that I am in fact disabled.