Monday, October 12, 2009
I'm really glad I'm a reader - that I have been reading memoires written by other people living with illness. It's helping me figure out what happens, when things that make me uncomfortable happen. I know every situation is different, but their seems to be general patterns that human beings fall into.
Let me explain. I was in a situation recently that required my physical participation. I couldn't do what was asked of me, infact, I couldn't do most things that were asked of me for the days preceding just because I was either in much pain, just wasn't up for it (mentaly exhausted), or knew I had no stamina. (Keep in mind I am the type of person that would go into work even when in pain- if I didn't go anywhere because of it, I wouldn't have a life.) So, here I am, knowing my body, which, you'd think is a good thing. G-d knows I rant about knowing your body. So, I knew what my limits were. Before this required participation I pretty much cancelled, asking that people in charge find a replacement. Well, what ensued was person in charge not taking my no for an answer. I kept repeating my no to the point that I was brought to tears, humiliated that "pain" would hold me back.
I have now officially entered that time and space I've read about by others living (and died) with illness. In the memoires I've read these negotiations with healthy people read like a tug of war - with healthy folks not at all respecting or understanding what NO means. I recall sad parts of memoires where kind-hearted and well intentioned friends or accomadating bosses at work would try and get the sick person to participate but all the while negating their boundary - forcing the ill person to almost vomit up the pain in terms of tears. And that's what happened to me - I was brought to tears, not because of the pain (which I have my own pain management system) but because I was not being heard and I was being second-guessed by someone in my world.
It felt as if the sick person doesn't really understand what you're saying no to and you need a well person to outline why your no is wrong and why you need to change your mind and participate. It's completely disrespectful and hurful - it shows the sick (in body) person that you think they're sick in mind too, not allowing them to make their own decisions and then questioning them when the decision they make for their health is not the one you want.
And that happened to me recently - and it sucked.
And as much as I know that it came from a place of inclusion - of trying to be included in whatever job/outing it still did exactly what I knew would be coming one day because I've been forwarned - thanks to other sick people who decided to take the time to be honest and write about this shit.