A normal person, from the outside. School, friends, sports. A normal person, from the inside. Dreams, goals, aspirations. Though my secret life begins to take hold, it begins to leak to my closest friends, slowly making them not my closest friends, it begins to leak to my educators, creating a wall of superficial pity, it begins to leak to the public, showing an image that I tried so hard to keep down, to keep to myself.
An image of a angry soldier, fighting to live day in and day out. A person who gets flagged as a cripple, as a drug addict, as weak… That’s who I’ve become. A person that no one wants to talk to on a bad day, because chances are my bad day will make yours much worse, though words, through actions. That’s not who I am.
It’s arguable that the only thing worse than living with chronic pain, is having to deal with the people around you, whilst dealing with chronic pain. “Wow, blue tape today”, “oh, yellow tape, very nice”, “the green tape doesn’t suit you”, “you must be feeling better, you’re not wearing tape!”. “Have the doctors figured it out get?”, “are you sick and tired of wearing braces and tape all the time?”, “does it hurt?”, “can I touch it?”, “why weren’t you at school yesterday?”, “another doctors appointment?”, “did your doctors even go to medical school?”. “You look horrible today”, “you look better today”, “you look like you haven’t had any sleep”. “You should see my doctor”, “you should try acupuncture”, “you should see a psychiatrist”, “you should take a break”, “you should take some Panadol or Neurophen”.
“You should try harder”…
The only thing that spices up my life is seeing new doctors and wearing different coloured tape, let me and my tape be. And certainly, when I’m not wearing my tape, it does not mean I’m better, most probably worse, and was in too much pain to apply said tape. No, the doctors haven’t figured it out yet, and yes, they went to medical school, and as it happens I am seeing the best specialists in the state, so you giving your medical suggestions doesn’t help me one bit, and you bagging on my very hardworking medical professionals won’t achieve anything but make me more angry, they’re doing all they can, there is a reason it is called ‘unexplained pain’. Yes, I am sick of wearing tape and braces, and yes, I’d much rather have them off then on. Of course it bloody well hurts, what did you expect? And no, you can’t touch it. Thank you for telling me I look horrible, it’s makes me feel so much better, and you can probably assure yourself that I had the same thought and overwhelming feeling when I got out of bed that morning. Also, thank you for telling me I look better, it doesn’t, and won’t, make me feel any better, ever. And if I look like I haven’t had any sleep, that is most probably because I haven’t, because, as it turns out, it is quite hard to go to sleep when pain plagues your nights. My team of doctors is probably better than your GP ten fold. Acupuncture won’t help, nor will Bown therapy, yoga or witchcraft. My mental health is fine, I don’t need a shrink. I think I am more than qualified to know when I should take a break. Panadol or Neurophen, even both of them put together, don’t even come close to the course of pain medications that I am on. And for heaven’s sake, I am trying my hardest. I am here, at school, almost every day, other than the days I am sitting with my legs wrapped around a chair in a doctors office. Sure, it takes its toll, I get angry, I get impatient but I’m still trying to live my life. I am still a human being, and I am still able to pull my weight, the only difference between you and I, is that my weight is 50 fold heavier than yours, and I am pulling mine through ten feet of mud.
I am living, just as every other person, there is no need to segregate me into a little pen of the unwilling and broken, population of only one. I am willing and I am not broken. I am strong. I can see through the clouded vision of pain, I can push through the voices that titter at my head, I can overcome the pain, if not halt it in its tracks. Though, alone it is very hard.
I want them to see, I want them to understand. I want them to empathise. I don’t want pity, I don’t want sorrow, I don’t want a cutting of flowers and a box of chocolates with a nice card every week, all I want is for them is a shred of integrity and understanding. The line between the two seems to get so clouded, and that rarely ever gets addressed. From the outside, a person who would see me on a daily basis, but not know me, would know that I live in some sort of pain, and that I was not the most pleasant person to be around. From the inside, a person who knew me well and took their time to talk to me, would know that I struggle a lot, but I push through the pain, they know when the pain is talking, not me. Though neither of these two groups know it true…
Pain is my best friend. I’ve stopped reaching for the white flag, and have kept fighting. Everyday is like a little battle, and everyday, when I take my last set of drugs and lie in bed, a little victory is on my side. Even though this happens, everyday, I’m still losing the war. No matter the amount of little wins I gain, there’s no hope for a victorious war. I’m lost for hope. I’ve given in. Every time I used to see a new doctor, or a new specialist, I used to entertain the possibility that this one might know. And every time afterwards I was silently reminded by myself that there was a reason it was called ‘unexplained pain’. I am strong, though tiny little chips have been made every day, and I’m at breaking point. My story isn’t a glamorous one. Nor is it one that is in sights of a happy ending. I try to live in the future. For the last few years I have worked so hard at school to set myself up for the career in medicine that I have wanted for a while now. Though that sometimes seems as if it is sliding away, that it was a foolish goal, being easily stopped by the army that is pain. Will it ever go away? I’ve learnt over the years to be hard, to grow a leathery skin, so that nothing can get in, and nothing can get out. Though, this has left me with no feeling for the niceties of our society.
All I want is people to see that, to understand that.
I don’t think life is meant to be a losing war, but I guess some manage to pick up the broken army.