Not exactly a eureka moment, but the thought just hit home today, about why I could never be an activist if any sort. Sure, I have my spurts of fist shaking and whatever rah-rah-rahing, but I become tired, and too quickly irritable, with the goings on in whatever activity or activism that I support and the incessant ranting. I know it is necessary, activists for any cause need to have tenacity, verve and dedication for their mission and vision. But I just don’t make the grade.
There are many reasons, of course, nothing is an isolated cause. However, one major spanner in the works for almost anything and everything in my life has been pain. Yes, physical pain. Long term, lifelong in fact, and it isn’t going to go away, not unless there is a miracle, or I die.
Pain is draining, to put it mildly. Sorry if I don’t seem very empathic or sympathetic to your coughs and colds, sorry if I become immediately distant both physically and mentally when you are down with any kind of infectious conditioin like the ubiquitous influenza etc. It’s because I cannot bear your moaning about something that, to me, is really a piece of cake. It’s because if I happen to catch whatever it is you’re spreading around so blithely, I will most definitely suffer a whole lot more pain than you’ll ever know or understand – until you develop cancer or some excruciating condition, that is. And forgive me if my sympathy is contrived when you complain to me about your sore throat and occasional mouth ulcers. Honestly? I don’t give a damn, so shut up already please, and stop whining.
It takes all I can muster to get through each day. Small things you never even notice, like opening your mouth to yawn, or eat, or brush your teeth, or laugh – for me, each of these little movements can induce sharp pain in my jaw joints, tongue, cheeks, inner lips etc. How about holding a knife, scissors or carrying a shopping bag? Some days, these too spell pain. Inflammation is the culprit. And Behcet’s is all about inflammation. No, my ulcers don’t come from viral or bacterial infections, they’re a result of burst blood vessels and inflammation breaking through mucus membranes. I cannot remember a day of life without pain, though high doses of prednisolone have helped alleviate the pain much. I like the euphoric feeling of being able to do little things without sharp shooting pain as a reflex result, but the side effects are frightening and I have stopped regular steroidal treatment. So, I chose pain, instead. And of course, painkillers are my best friends.
Not another rant about Behcet’s, you may say? And how can I blame you for thinking this is all a melodrama? I have never met anyone who has never suffered from chronic incurable pain who yet has enough empathy to understand what people like us go through. Neither autistic nor neurotypical. And so I keep my melodramatic rants to this place. I never speak about it to anyone in real life, not in graphic realistic terms anyway. I have learnt to shut up and just get on with the yawning, eating, drinking, teeth brushing, pencil holding, cutting, hobbling and whatever else, with as much dignity and silence as I can muster. It works. So well, in fact, that nobody even notices at all, how tough it is for me to get through a simple meal. I am such a bloody good actress, I am. I look great, I can even be fabulous, glamorous, a diva and a bitch. How cool is that?
But pain is always there to remind me of all the things I know I cannot ever do, and to exact a price for whatever I manage to do. And everything I do achieve, even if it’s for a split second, is a mountain I have climbed. Including this post. Because my eyes and my head hurts so badly, but I cannot take the stronger painkiller, since I have already taken another drug for something else.
Activists are people with enough energy to devote to their cause. I can never have that energy. I respect activists. But sorry, my friends, I am tired right now of your rants, your wanting to change the world blah, not because I do not intellectually support your causes, but just because the reality of my life is too extremely different from yours. And I am too exhausted from being empathic to yours, while you will never give mine a chance. In any case, I don’t need you. You cannot lessen my pain. I have no cause to rant about, I have to concentrate on getting through the day, each day, doing things you do too, but you don’t even think about, and doing things you do which you subtly boast about as well. Even in my sleep, I have to adjust to shooting pain. So, while I like to read about this or that movement and mentally support this or that cause, I cannot afford to give it the kind of cogency that you lot seem to do. Forgive me if I even sometimes sound mocking. Perhaps I am. If you only knew…
Pain has no empathy for the healthy. And health has no empathy for the ones in chronic pain. That’s just the way it is. So don’t even claim otherwise. You’ll only come across as incredibly stupid, or insensitive. OK, enough of my pain conundrum. Time for bed. And have to be careful how I turn and at which angles I lay which parts of my body (inducing veritgo, triggering pain from swollen joints in various places etc ect ad nauseum). Having hypersensitivity doesn’t help, does it?
As for the big debate – It’s really no big choice, I choose autism any time over pain. I don’t care what it is you people rant and rave about, for me, in my little microcosmos, autism has been a blessing, without which I may yet have not been able to deal with this amount of pain.
