There are days when I just want to scream at people to back the frak off. Days where I wish I didn’t hear the words ‘you are an inspiration to me.’ I’m not an inspiration. I’m me. I’ve had several of my disabilities since I was born, a couple for as long as I can remember, and the others, well they may as well have been there for life. I push through because there is no other choice. I could allow the PTSD to win and combine with my Asperger’s to throw me under a bus, or I could try and get myself moving, search for a job, sketch, write, and try and enjoy the positives that intermittently disrupt the negativity. When you live with chronic pain and chronic illness, you become an expert in hiding it behind a smile until you just can’t anymore. Then when people see past the facade and through the cracks, it’s amazing how quickly they can back away from you.
You get used to telling people ‘I’m fine.’ You tell yourself you are. You push yourself beyond your limits and then you’ll find that you pay for it later. I heard the phrase ‘spoon overdraft’ the other day, borrowing spoons from a non-existent reserve just to be able to enjoy something or do something you otherwise shouldn’t be. I guess you can say I’ve been doing that most of my life. None of this makes me an inspiration. If anything it makes me deeply human. The pressure we ‘Spoonies’ place on ourselves to compete with those without chronic illness/pain is immense. The pressure Aspies feel to act in a neurotypical way, in effect hiding ourselves from view, is often heavy on our shoulders. This isn’t inspirational. It’s, in my opinion, a shame. We should embrace our differences, and that’s something I’m starting to learn. I’m also starting to understand that it’s ok to say no. If my body needs to rest, then I should let it do just that.
My inspirations are people who use their experiences in order to help others. I’d much rather be recognised for the way in which I help other people than live my own life. If you want to be inspired by me, be inspired by the fact I taught myself to sketch. That I self-publish my writing because I want the world to read it. Be inspired by the fact that I am an activist for disabled rights, LGBTQ rights, and the rights of all minorities. But don’t choose to see the fact I got through another day in pain that I can’t even begin to describe be your inspiration. My normal is not yours. So telling me you don’t know how I get through each day with the pain I’m in (physical, mental, emotional), is not helpful to either of us. I do it because there is no other option. But if you want to tell me that me self-publishing has inspired you to dust off the old book you were writing a decade ago, I’ll willingly take that compliment.